Accelerating detection of neonatal sepsis: a machine learning-based approach (ADONIS)
type: Resource
type: Catalog
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws from Vaud and Zurich
applicable legislation: HRO - Human Research Ordinance
abstract: ADONIS aimes to improve early detection and management of neonatal sepsis, a leading cause of infant mortality and long-term complications in Switzerland and worldwide. Despite its burden, neonatal sepsis remains under-addressed in Swiss research funding. ADONIS leverages a uniquely curated, high-resolution clinical dataset from neonates treated at the University Hospital of Lausanne (CHUV), the University Children's Hospital of Zurich (KiSpi), and University Hospital of Zurich (USZ). The project leverages patient demographics, clinical signs, data from support devices, point-of-care diagnostics, lab results, and treatments to develop advanced machine learning methods. Its objective is to identify subtle physiological changes that precede overt clinical signs of sepsis, thereby enabling earlier and more accurate intervention. ADONIS filles a major gap in national infrastructure by integrating neonatal data into the Swiss Personalized Health Network (SPHN), linking two existing National Data StreamsâSwissPedHealth and IICU. The project's outcomes sets the foundation for data-driven neonatal care and fosters improved sepsis management protocols, potentially reducing mortality, morbidity, and inappropriate antibiotic use among newborns.
access rights: accessRights
conforms to: ADONIS RDF Schema 2024.1
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:17:35.943933+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:17:35.943933+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: ClinicalDataPlatform
source: Case Report Form
temporal: PeriodOfTime
  comment: USZ
  end date: 2022-12-31
  start date: 2018-01-01
temporal: PeriodOfTime
  comment: KiSpi
  end date: 2022-12-31
  start date: 2015-01-01
temporal: PeriodOfTime
  comment: CHUV
  end date: 2022-12-31
  start date: 2007-01-01
keyword: ADONIS-catalog
keyword: ADONIS-2024.1
theme taxonomy: Electronic Health Record
theme taxonomy: NCIT C143827
theme taxonomy: HEAL
theme taxonomy: NCIT C116802
theme taxonomy: NCIT C154922
theme taxonomy: NCIT C53511
theme taxonomy: Machine Learning
theme taxonomy: Personalized Medicine
version: 1.0
has acronym: ADONIS
has age range: 0 - 1.9 years
has consent type: General Consent and consent waiver (art. 34 HRA)
has data provider: Universitatsspital Zurich
has data provider: Centre hospitalier universitaire vaudois
has data provider: Universitats-Kinderspital Zurich
has data type: Clinical Routine
has data type: Clinical Time Series
has data type: eCRF (Research and Quality Data)
has data use restriction: Researchers interested in accessing data can request the necessary Data Transfer and Use Agreement (DTUA), via the Principal Investigator. Upon request, the consortium executive board will evaluate the application. If accepted, access will be granted to BioMedIT under the supervision of the Principal Investigator. Researchers who wish to analyze, reproduce, or gain further insights from the data must submit a request for de-identified patient-level data to heads of the current project. Requests must clearly justify the use of the data and specify the required variables. External users or collaborators should demonstrate a proven track record in the field, provide a detailed research protocol, and explain how they will handle the data ethically and scientifically. The protocol should include: Collaborators and their affiliations, Potential conflicts of interest, Project funding details, Inclusion/exclusion criteria, Scientific questions to be addressed, Detailed analysis plan, Peer-reviewed publication in the field, Approval Process. The ADONIS executive board will review the application, recommending any necessary protocol adjustments to enhance quality and ensure alignment with project objectives. Before access to data is granted, both parties will sign the Data Transfer and Use Agreement (DTUA) based on the Swiss Personalized Health Network (SPHN) template. This agreement will define responsibilities related to data protection, management, authorship (in accordance with international standards), and the proper citation of sources and funding. Additionally, it will specify the required date for secure data destruction after analysis is completed, with confirmation of destruction submitted to the project leads. To get access to the dataset, please contact the following email: eric.giannoni@chuv.ch
has exclusion criteria: Explicit refusal of general consent
has exclusion criteria: Hospital stays of less than 48 hours
has funding organization: Swiss Personalized Health Network
has inclusion criteria: Hospitalized in the neonatal ward at either CHUV, USZ, or KiSpi
has inclusion criteria: Newborns, defined as inpatients aged less than 28 days for those born at a gestational age >= 37 weeks, and infants with a corrected age (gestational + postnatal age) < 44 weeks for those born < 37 weeks
has inclusion criteria: Hospital stay in the following interval: 2007-01-01 - 2023-06-30 (CHUV), 2018-01-01 - 2023-06-30 (USZ), 2015-01-01 - 2023-06-30 (KiSpi)
has inclusion criteria: General Consent with Art. 34 HRA
has number of patients: 15361
has principal investigator: Prof. Eric Giannoni
has publication: s41390-025-04159-x
has publication: j.arcped.2024.10.003
has publication: fped.2025.1563979
has ratio of sexes: 1.32
has study type: Retrospective cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:35.943933+00:00
metadata modified: 2026-03-03T17:17:40.422715+00:00

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IICU 2025.1

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Distribution of Infection Radar Data Set
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fn: Paolo Paioni

SwissPedHealth Main Dataset
type: Dataset
type: Resource
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: HRO - Human Research Ordinance
health category: human genetic, epigenomic and genomic data
health category: OHMD
health category: electronic health data from EHRs
health category: data on factors impacting on health, including socioeconomic, environmental and behavioural determinants of health
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
max typical age: 20
min typical age: 0
number of records: 319095
number of unique individuals: 319095
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2024.2
conforms to: https://www.biomedit.ch/rdf/sphn-schema/sph/2025/1
conforms to: SPH RDF Schema 2024.1
description: Due to the unique epidemiology, developmental changes, and high vulnerability of children, there is an urgent need to continuously improve health care based on real world pediatric data. The digital transformation is a unique opportunity to shape a data-driven, agile, learning health care system and deliver more efficient and personalized care to children and their families. The goal of SwissPedHealth is to build a sustainable and scalable infrastructure to make routine clinical data from pediatric hospitals in Switzerland interoperable, standardized, quality-controlled, and ready for observational research, quality assurance, trials, and health-policy creation. SwissPedHealth is one of four National Data Streams co-funded by the Swiss Personalized Health Network (SPHN) and the ETH focus area Personalized Health Related Technologies (PHRT). Dedicated catalog and dataset are provided for PHRT data. SwissPedHealth develops modular governance and regulatory strategies in collaboration with clinical data warehouses, the Data Coordination Center, Biomedical Information Technology Network, and others. The data stream contains work packages focusing on: 1) governance and implementation of standardized data collection, 2) nested projects to test the feasibility of the data stream, 3) a lighthouse project that enriches the data stream by integrating multi-omics data, aiming to improve diagnoses of rare diseases, and 4) engagement with families through patient and public involve-ment activities and interviews.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: HealthcareInformationSystem
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  comment: for the Nested Projects, exception NP4 administered inpatients between 2021-2022 only
  end date: 2025-12-31
  start date: 2017-01-01
temporal: PeriodOfTime
  comment: for patients recruited through the Lighthouse Project (Prospective cohort, Phase 3
  end date: 2025-12-31
  start date: 2022-09-01
keyword: SwissPedHealth-2024.1-dataset01
keyword: SPH-SwissPedHealth-2024.1-dataset01
theme: HEAL
theme: Clinical Data
theme: Personalized Medicine
version: 1.0
has age range: 0 - 20 years (at admission)
has consent type: General consent (for the general cohort irrespective of consent status)
has consent type: Informed consent (patients recruited through the Lighthouse Project (Prospective cohort, Phase 3))
has data provider: Inselspital - Universitatsspital Bern
has data provider: Hopitaux universitaires de Geneve
has data provider: Universitats-Kinderspital beider Basel
has data provider: Ostschweizer Kantonspital
has data provider: Universitats-Kinderspital Zurich
has data provider: Luzerner Kantonsspital
has data provider: Centre hospitalier universitaire vaudois
has data type: Physiological Tests
has data type: Clinical Routine
has data type: Socioeconomic Characteristics
has data use restriction: Access to the NDS data is regulated through the SwissPedHealth infrastructure consortium agreement V2.0 18.11.2022. As brief explanation: When planning to carry out a project using data from the SwissPedHealth NDS, you will need to set up a data project consortium agreement (DPCA) involving all participating partners. Note that this should include "internal" SwissPedHealth partners and "external" partners, i.e. those not part of the SwissPedHealth NDS Infrastructure Consortium. For the DPCA, projects should consider the SwissPedHealth general terms and conditions (GTCs) and, wherever possible, try to adopt them without or with minor deviations. This will facilitate the process of legal review and signing for all "internal" partners, since the GTCs will have already been reviewed as part of the development and adoption process. If deviations are required, these will need to be specified in the DPCA, and should be highlighted during the legal review of the DPCA. Note that the following additional documentation will be required to complete the DPCA: Project funding application/Proof of funding, Study protocol and Ethical approval. In case the latter is not available it should be added as soon as available, and the DPCA cannot be executed without evidence of ethical review and approval. All parts highlighted in yellow in the DPCA template need to be completed/amended. All DPCAs will need to incorporate a data transfer and use agreement (DTUA) and data transfer and processing agreement (DTPA). These are included in the SwissPedHealth DPCA template, reflecting SPHN requirements. Please note that adaptations may be necessary in cases where the Data Processors are not one of the BioMedIT nodes (SENSA - Lausanne, SciCORE - Basel, SIS - Zurich). For the DTUA section, each project will need to describe and depict the planned data flow as well as data and metadata to be transferred. All parts highlighted in yellow in the DTUA and DTPA templates need to be completed/amended. Acc…
has inclusion criteria: In- and outpatients
has inclusion criteria: Age < 20 years at admission
has inclusion criteria: All pediatric divisions
has inclusion criteria: Male and female
has inclusion criteria: Patients attended in pediatric hospitals
has number of patients: 319095
has publication: vbad142
has publication: https://doi.org/10.1101/2024.07.01.24309377
has publication: bmjopen-2024-091884
has publication: s42255-022-00720-8
has ratio of sexes: 1.16
has short title: Main Dataset
has study type: N/A (The SwissPedHealth Dataset is a registry - not analyzed at this level)
metadata identifier: identifier
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fn: Michael Koller

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  has hospital: INSEL
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  class: https://biomedit.ch/rdf/sphn-resource/icd-10-gm/15
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class partition: Krankheiten des Blutes und der blutbildenden Organe sowie bestimmte Störungen mit Beteiligung des Immunsystems
class partition: Symptome und abnorme klinische und Laborbefunde, die anderenorts nicht klassifiziert sind
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class partition: Operationen am Verdauungstrakt (42â54)
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class partition: Neubildungen
class partition: Operationen am hämatopoetischen und lymphatischen System (40â41)
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class partition: Operationen am respiratorischen System (30â34)
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class partition: Krankheiten des Kreislaufsystems
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class partition: Operationen am Nervensystem (01â05)
class partition: Endokrine, Ernährungs- und Stoffwechselkrankheiten
class partition: CARDIOVASCULAR SYSTEM
class partition: NERVOUS SYSTEM
class partition: Psychische und Verhaltensstörungen
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:01.362287+00:00
metadata modified: 2026-03-03T17:15:01.362287+00:00

SPAC Clinical Routine Data (2024.1)

Code Frequency Profile

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description: RESTRICTED

VOID Dataset associated with the distribution
type: Dataset
access rights: accessRights
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
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metadata issued: 2026-03-03T17:15:05.060381+00:00
metadata modified: 2026-03-03T17:15:05.060381+00:00

Clinical routine data for SPAC participants and for non-participants
type: Dataset
type: Resource
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
has coding system: https://www.bfs.admin.ch/news/de/2024-0148
has coding system: UCUM
has coding system: LOINC
has coding system: SNOMED CT
hdab: SPAC consortium
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: data from research cohorts, questionnaires and surveys related to health, after the first publication of the related results
health category: electronic health data from EHRs
max typical age: 18
min typical age: 0
number of records: 13250
number of unique individuals: 13250
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2024.2
conforms to: SPH RDF Schema 2024.1
description: This is a combined dataset which contains clinical routine data for (a) SPAC participants via SPHN which was used to compare with manually collected data saved in the study database, to assess if routine healthcare data could supplement or replace traditional data collection methods, and for (b) children who visited the collaborating clinics in SPAC but did not participate in the study, which was used to compare with data from SPAC participants to evaluate the generalizability of the results from the SPAC cohort.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Cohort
source: ClinicalDataPlatform
temporal: PeriodOfTime
  end date: 2023-12-31
  start date: 2017-01-01
keyword: SPAC-2024.1-Clinical-routine-data
keyword: SPAC-2024.1-dataset-01
theme: HEAL
theme: Personalized Medicine
version: 1.0
has age range: 0 - 18 years
has consent type: Informed Consent
has consent type: General Consent
has data provider: Luzerner Kantonsspital
has data provider: Universitats-Kinderspital Zurich
has data provider: Institute of Social and Preventive Medicine, University of Bern
has data provider: Inselspital - Universitatsspital Bern
has data type: Longitudinal
has data type: Clinical Routine
has data use restriction: Reuse of data of SPHN-SPAC is described in the SPHN-SPAC Data Project Consortium Agreement. Briefly, data may be shared under the prerequisites listed in the SwissPedHealth General Terms and Conditions (GTC), if they meet the following conditions: 1. the Project Executive Board must approve the sharing the data, 2. If the data includes personal information, each person or group that provided the data must give their individual, written consent, 3. Only parties or third parties who have signed an agreement with all project members (and approved by the Project Executive Board) can access the data.4. The sharing of data must follow all relevant laws, particularly those about human research and data usage, 5. The data cannot be used for profit or commercial purposes, 6. If required by law, the sharing must have approval from ethical committees or other relevant authorities. Contact point: claudia.kuehni@unibe.ch.
has inclusion criteria: Enrolled in SPAC study during the above period
has inclusion criteria: Patients who visited the pneumology clinics between the period and at the age described above and did not participate in the SPAC study or refuse the general consent.
has number of patients: 13250
has publication: ppul.27499
has publication: https://doi.org/10.1183/23120541.00050-2018
has ratio of sexes: 1.51(males 7965, females 5285)
has short title: SPAC and non-SPAC participant dataset
has study type: Observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:57.379955+00:00
metadata modified: 2026-03-03T17:18:01.730976+00:00

SwissPedHealth: Development of a multi-omics workflow to discover rare diseases in children with extreme phenotypes - MOMIC
type: Resource
type: Catalog
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: HRO - Human Research Ordinance
abstract: The identification of underlying genetic and molecular mechanisms is an essential prerequisite for personalized medicine. Building on our preliminary data created in Phase 1, we aim to develop (Phase 2) and test (Phase 3) a Swiss multi-omics workflow to identify rare diseases in children with extreme phenotypes. This will be performed in two further phases. In Phase 2, we will include children from existing cohorts and re-use samples and data to develop novel computational methods to integrate multi-omics data into a diagnostic workflow. This will be based on samples and data with ethical approval already in place. In Phase 3, we will prospectively recruit children with extreme phenotypes from Swiss hospitals to test the multi-omics workflow (done in addition to routine diagnostic procedures) and identify rare diseases causing extreme phenotypes. We will also recruit patient's relatives (healthy parents and siblings) as controls for genomic analysis
access rights: accessRights
conforms to: https://www.biomedit.ch/rdf/sphn-schema/sph/2025/1
conforms to: SPH RDF Schema 2024.1
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:15:56.451347+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:15:56.451347+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: ClinicalDataPlatform
source: Clinical Registry
source: Research Laboratory
source: Data Repository
source: Omics Facility
temporal: PeriodOfTime
  comment: Phase 3
  end date: 2025-09-01
  start date: 2022-07-01
keyword: SPH-SwissPedHealth-MOMIC-catalog
keyword: SwissPedHealth-MOMIC-2025.1
keyword: SwissPedHealth-MOMIC-catalog
keyword: SPH-SwissPedHealth-MOMIC-2025.1
theme taxonomy: HEAL
theme taxonomy: Clinical Data
theme taxonomy: Personalized Medicine
theme taxonomy: Phenotypic abnormality
theme taxonomy: NCIT C205365
version: 1.0
has acronym: MOMIC
has age range: N/A (Phase 2)
has age range: 0 - 20 years (Phase 3)
has consent type: General consent (Phase 2)
has consent type: Informed consent (Phase 3)
has data provider: Swiss Multi-Omics Center
has data provider: Centre hospitalier universitaire vaudois
has data provider: Universitats-Kinderspital beider Basel
has data provider: Inselspital - Universitatsspital Bern
has data provider: Universitats-Kinderspital Zurich
has data provider: Hopitaux universitaires de Geneve
has data type: Clinical Routine
has data type: Phenotypic
has data type: Omics
has data use restriction: Access to the NDS data is regulated through the SwissPedHealth infrastructure consortium agreement V2.0 18.11.2022. As brief explanation: When planning to carry out a project using data from the SwissPedHealth NDS, you will need to set up a data project consortium agreement (DPCA) involving all participating partners. Note that this should include "internal" SwissPedHealth partners and "external" partners, i.e. those not part of the SwissPedHealth NDS Infrastructure Consortium. For the DPCA, projects should consider the SwissPedHealth general terms and conditions (GTCs) and, wherever possible, try to adopt them without or with minor deviations. This will facilitate the process of legal review and signing for all "internal" partners, since the GTCs will have already been reviewed as part of the development and adoption process. If deviations are required, these will need to be specified in the DPCA, and should be highlighted during the legal review of the DPCA. Note that the following additional documentation will be required to complete the DPCA: Project funding application/Proof of funding, Study protocol and Ethical approval. In case the latter is not available it should be added as soon as available, and the DPCA cannot be executed without evidence of ethical review and approval. All parts highlighted in yellow in the DPCA template need to be completed/amended. All DPCAs will need to incorporate a data transfer and use agreement (DTUA) and data transfer and processing agreement (DTPA). These are included in the SwissPedHealth DPCA template, reflecting SPHN requirements. Please note that adaptations may be necessary in cases where the Data Processors are not one of the BioMedIT nodes (SENSA - Lausanne, SciCORE - Basel, SIS - Zurich). For the DTUA section, each project will need to describe and depict the planned data flow as well as data and metadata to be transferred. All parts highlighted in yellow in the DTUA and DTPA templates need to be completed/amended. Acc…
has exclusion criteria: Age > 20 years, Insufficient quality of language communication or cognitive capacity to understand study procedures and to give consent, Documented refusal of MOMIC informed consent (Phase 3)
has exclusion criteria: We will exclude samples, for which a documented refusal of further use is available (Phase 2)
has funding organization: Swiss Personalized Health Network
has funding organization: Personalized Health and Related Technologies
has inclusion criteria: Re-use of patient samples and data from existing cohorts (MMA Study: BASEC Nr. PB_2020_00053, SPSS: KEK-Nr. 029/2011, GIS: KEK Nr. 2015-0555, EUCLIDS: UK Research Ethics Committee Nr. 11/LO/1982). Only for samples, for which ethics approval and consent is available (Phase 2)
has inclusion criteria: Patients attended in pediatric hospitals, All pediatric divisions, Age < 20 years, Male and female, In- and outpatients, acceped and signed MOMIC informed consent (Phase 3)
has number of patients: 200
has principal investigator: Prof. Julia E. Vogt
has principal investigator: Prof. Luregn Schlapbach
has project partner: Universitats-Kinderspital beider Basel
has project partner: Inselspital - Universitatsspital Bern
has project partner: Swiss Multi-Omics Center
has project partner: Hopitaux universitaires de Geneve
has project partner: Centre hospitalier universitaire vaudois
has project partner: Universitats-Kinderspital Zurich
has publication: s42255-022-00720-8
has publication: vbad142
has publication: bmjopen-2024-091884
has study type: Prospective, observational study (Phase 3)
has study type: Retrospective cohort study (Phase 2)
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:56.451347+00:00
metadata modified: 2026-03-03T17:16:11.876771+00:00

Catalog Profile

SPO-NDS 2025.1

Distribution of Drug Plasma Level Data and associated Clinical Data of Fludarabine
type: Distribution
type: Resource
access rights: accessRights
format: CSV
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/csv
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:52.432886+00:00
metadata modified: 2026-03-03T17:16:52.432886+00:00

ADONIS Cohort: High-Resolution Clinical Data for Neonatal Sepsis Detection
type: Dataset
type: Resource
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws from Vaud and Zurich
has coding system: GTIN
has coding system: ATC
has coding system: SNOMED CT
has coding system: LOINC
has coding system: UCUM
has coding system: https://www.bfs.admin.ch/news/de/2024-0148
has coding system: CHOP
hdab: Centre hospitalier universitaire vaudois
health category: electronic health data from EHRs
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: personal electronic health data automatically generated through medical devices
max typical age: 1
min typical age: 0
number of records: 15361
number of unique individuals: 15361
access rights: RESTRICTED
conforms to: ADONIS RDF Schema 2024.1
description: The SPHN ADONIS dataset is a high-resolution, multi-center clinical dataset designed to support research on the early detection of neonatal sepsis using machine learning. It includes data from over 15'000 neonates admitted to the neonatal intensive care units of three major Swiss hospitalsâCHUV, USZ, and KiSpiâbetween 2007 and 2022. The dataset comprises >400 confirmed sepsis cases, >90 necrotizing enterocolitis cases, and a large control group. Data are collected at one-minute intervals and cover more than 800 variables, including vital signs, laboratory results, treatments, and device outputs. All data are semantically harmonized using SPHN standards and mapped to international ontologies such as SNOMED CT, LOINC, and ICD-10. Stored in RDF format and hosted on the secure BioMedIT infrastructure, the dataset is interoperable, pseudonymized, and ethically approved for research use.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: ClinicalDataPlatform
source: Case Report Form
temporal: PeriodOfTime
  comment: CHUV
  end date: 2022-12-31
  start date: 2007-01-01
temporal: PeriodOfTime
  comment: KiSpi
  end date: 2022-12-31
  start date: 2015-01-01
temporal: PeriodOfTime
  comment: USZ
  end date: 2022-12-31
  start date: 2018-01-01
keyword: ADONIS-2024.1-Retrospective-cohort-Phase-3-clinical-data
keyword: ADONIS-2024.1-dataset-01
keyword: ADONIS-2024.1-Retrospective-cohort
keyword: ADONIS-2024.1-Clinical-dataset
theme: HEAL
theme: Electronic Health Record
theme: NCIT C53511
theme: Machine Learning
theme: Personalized Medicine
theme: NCIT C143827
theme: NCIT C116802
theme: NCIT C154922
version: 1.0
has age range: 0 - 1.9 years
has consent type: General Consent and consent waiver (art. 34 HRA)
has data provider: Centre hospitalier universitaire vaudois
has data provider: Universitats-Kinderspital Zurich
has data provider: Universitatsspital Zurich
has data type: Clinical Time Series
has data type: Clinical Routine
has data type: eCRF (Research and Quality Data)
has data use restriction: Researchers interested in accessing data can request the necessary Data Transfer and Use Agreement (DTUA), via the Principal Investigator. Upon request, the consortium executive board will evaluate the application. If accepted, access will be granted to BioMedIT under the supervision of the Principal Investigator. Researchers who wish to analyze, reproduce, or gain further insights from the data must submit a request for de-identified patient-level data to heads of the current project. Requests must clearly justify the use of the data and specify the required variables. External users or collaborators should demonstrate a proven track record in the field, provide a detailed research protocol, and explain how they will handle the data ethically and scientifically. The protocol should include: Collaborators and their affiliations, Potential conflicts of interest, Project funding details, Inclusion/exclusion criteria, Scientific questions to be addressed, Detailed analysis plan, Peer-reviewed publication in the field, Approval Process. The ADONIS executive board will review the application, recommending any necessary protocol adjustments to enhance quality and ensure alignment with project objectives. Before access to data is granted, both parties will sign the Data Transfer and Use Agreement (DTUA) based on the Swiss Personalized Health Network (SPHN) template. This agreement will define responsibilities related to data protection, management, authorship (in accordance with international standards), and the proper citation of sources and funding. Additionally, it will specify the required date for secure data destruction after analysis is completed, with confirmation of destruction submitted to the project leads. To get access to the dataset, please contact the following email: eric.giannoni@chuv.ch
has exclusion criteria: Hospital stays of less than 48 hours
has exclusion criteria: Explicit refusal of general consent
has inclusion criteria: Hospital stay in the following interval: 2007-01-01 - 2023-06-30 (CHUV), 2018-01-01 - 2023-06-30 (USZ), 2015-01-01 - 2023-06-30 (KiSpi)
has inclusion criteria: Hospitalized in the neonatal ward at either CHUV, USZ, or KiSpi
has inclusion criteria: Newborns, defined as inpatients aged less than 28 days for those born at a gestational age >= 37 weeks, and infants with a corrected age (gestational + postnatal age) < 44 weeks for those born < 37 weeks
has inclusion criteria: General Consent with Art. 34 HRA
has number of patients: 15361
has publication: j.arcped.2024.10.003
has publication: fped.2025.1563979
has publication: s41390-025-04159-x
has ratio of sexes: 1.32
has study type: Retrospective cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:36.638707+00:00
metadata modified: 2026-03-03T17:17:40.272946+00:00

SwissPedDW (2024.1)

SwissPedHealth MOMIC Phase 3 Clinical Data (2025.1)

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

Drug Plasma Level Data and associated Clinical Data of Busulfan
type: Resource
type: Dataset
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
has coding system: CHOP
has coding system: LOINC
has coding system: SNOMED CT
has coding system: https://www.bfs.admin.ch/news/de/2024-0148
has coding system: UCUM
hdab: SwissPedDW Data Access and Re-Use Committee
health category: electronic health data from EHRs
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: human genetic, epigenomic and genomic data
health category: OHMD
max typical age: 25
min typical age: 0
number of records: 14
number of unique individuals: 14
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2024.2
description: The dataset contains drug plasma level data of busulfan and complementary clinical data of patients receiving busulfan-based conditioning regimens for stem cell transplantation. The data will be used in pharmacokinetic models to better understand the pharmacokinetics of this drug and therefore be able to optimise the dosage regimens for children.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: ClinicalDataPlatform
source: HealthcareInformationSystem
temporal: PeriodOfTime
  end date: 2021-12-31
  start date: 2014-04-01
keyword: SwissPedDW-2024.1-Busulfan-substudy
keyword: SwissPedDW-2024.1-dataset-02
theme: Personalized Medicine
theme: Pediatric
theme: Pharmacokinetics
theme: HEAL
version: 1.0
has age range: 0 - 25
has consent type: General Consent
has data provider: Universitats-Kinderspital Zurich
has data type: Clinical Routine
has data use restriction: Access to the SwissPedDW Demonstrator project data is regulated by the SwissPedDW governance bodies. Approval is given by the SwissPedDW Reuse and Access Committee. Contact: paolo.paioni@kispi.uzh.ch.
has inclusion criteria: Signed general consent
has inclusion criteria: Hematopoietic stem cell transplantation
has inclusion criteria: Routinely measured drug levels (TDM: Therapeutic Drug Monitoring) for Busulfan
has inclusion criteria: Inpatient
has number of patients: 14
has publication: pharmaceutics16010013
has publication: pharmaceutics13101596
has publication: psp4.12723
has ratio of sexes: 13/1 (m/f) = 13
has short title: Busulfan sub-study dataset
has study type: Data registry
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:45.732095+00:00
metadata modified: 2026-03-03T17:16:50.214694+00:00

VOID Dataset Profile

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-5a79215c-8306-4c34-adb3-73271839f4f6
type: Individual
fn: Dr. Morgan Sangeux

accessRights
type: RightsStatement
description: RESTRICTED

Concept Availability
type: DirectContainer
has member relation: hasConceptAvailability

INSEL Clinical Routine Dataset (2025.1)

Drug Plasma Level Data and associated Clinical Data of Fludarabine
type: Dataset
type: Resource
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
applicable legislation: HRO - Human Research Ordinance
has coding system: ucum.org
has coding system: CHOP
has coding system: LOINC
has coding system: SNOMED CT
has coding system: https://www.bfs.admin.ch/news/de/2024-0148
hdab: SwissPedDW Data Access and Re-Use Committee
health category: human genetic, epigenomic and genomic data
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: OHMD
health category: electronic health data from EHRs
max typical age: 75
min typical age: 18
number of records: 28
number of unique individuals: 28
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2024.2
description: The dataset contains drug plasma level data of fludarabine and complementary clinical data. The data will be used in pharmacokinetic models to better understand the pharmacokinetics of this drug and therefore be able to optimise dosage regimens.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: HealthcareInformationSystem
source: ClinicalDataPlatform
temporal: PeriodOfTime
  end date: 2024-12-31
  start date: 2023-02-01
keyword: SwissPedDW-2024.1-Fludarabine-substudy
keyword: SwissPedDW-2024.1-dataset03
theme: Adult
theme: Personalized Medicine
theme: Pharmacokinetics
theme: HEAL
version: 1.0
has age range: 18 - 75
has consent type: Informed Consent
has data provider: Universitatsspital Zurich
has data type: Clinical Routine
has data use restriction: Access to the SwissPedDW Demonstrator project data is regulated by the SwissPedDW governance bodies. Approval is given by the SwissPedDW Reuse and Access Committee. Contact: paolo.paioni@kispi.uzh.ch.
has exclusion criteria: Mismatched related and unrelated donors
has exclusion criteria: Any coexisting medical or psychological condition that would preclude participation in the required study procedures, as judged by the treating physician
has exclusion criteria: Any condition which precludes initiation of treatment (e.g. breast feeding, pregnancy, infections etc.)
has exclusion criteria: Umbilical cord blood transplants
has inclusion criteria: Routinely measured drug levels (TDM: Therapeutic Drug Monitoring) for Fludarabine
has inclusion criteria: HLA-identical and related haplotypical donors
has inclusion criteria: AML in CR1
has inclusion criteria: Inpatient
has inclusion criteria: Signed informed consent
has number of patients: 28
has publication: psp4.12723
has ratio of sexes: 15/13 (m/f) = 1.15
has short title: Fludarabine sub-study dataset
has study type: Observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:51.274994+00:00
metadata modified: 2026-03-03T17:16:56.638065+00:00

accessRights
type: RightsStatement
description: RESTRICTED

healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
label: Healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements

accessRights
type: RightsStatement
description: RESTRICTED

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-d060e9c0-0129-4520-a126-fc8ffe42f9aa
type: Individual
fn: Eric Giannoni

Using routine health care data to facilitate clinical cohort studies (SPAC)
type: Resource
type: Catalog
applicable legislation: Cantonal data protection laws
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
abstract: The Swiss Paediatric Airway Cohort (SPAC) is an ongoing study that includes children seen at pediatric pulmonology clinics across Switzerland, where we collect questionnaires and clinical data from hospital records. However, manual collection of clinical data is time-consuming, and frequent updates are needed to track patients across multiple visits, increasing the risk of missing data. In the SPHN-SPAC project, we obtained clinical data for SPAC participants via SPHN and compared it with manually collected data to determine whether routine healthcare data could supplement or replace traditional data collection methods. Additionally, we obtained clinical information from children who visited the clinics but did not participate and compare it with the data from SPAC participants to evaluate the generalizability of the SPAC cohort results. Lastly, we aimed to leverage routine healthcare data to obtain complete longitudinal information, including test results (e.g., lung function) and healthcare utilization details (e.g., emergency visits, hospitalizations).
access rights: accessRights
conforms to: SPH RDF Schema 2024.1
conforms to: SPHN RDF Schema 2024.2
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:17:56.654887+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:17:56.654887+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: Cohort
source: ClinicalDataPlatform
temporal: PeriodOfTime
  end date: 2023-12-31
  start date: 2017-01-01
keyword: SwissPedHealth-2024.1
keyword: SPAC-catalog
keyword: SPH-SwissPedHealth-2024.1
keyword: SPAC-2024.1
theme taxonomy: Personalized Medicine
theme taxonomy: HEAL
theme taxonomy: clinical data
version: 1.0
has acronym: SPHN-SPAC
has age range: 0 - 18 years
has consent type: General Consent (non-participants)
has consent type: Informed Consent (SPAC participants)
has data provider: Universitats-Kinderspital Zurich
has data provider: Luzerner Kantonsspital
has data provider: Inselspital - Universitatsspital Bern
has data provider: Institute of Social and Preventive Medicine, University of Bern
has data type: Longitudinal
has data type: Clinical Routine
has data type: PROMs
has data use restriction: Reuse of data of SPHN-SPAC is described in the SPHN-SPAC Data Project Consortium Agreement. Briefly, data may be shared under the prerequisites listed in the SwissPedHealth General Terms and Conditions (GTC), if they meet the following conditions: 1. the Project Executive Board must approve the sharing the data, 2. If the data includes personal information, each person or group that provided the data must give their individual, written consent, 3. Only parties or third parties who have signed an agreement with all project members (and approved by the Project Executive Board) can access the data.4. The sharing of data must follow all relevant laws, particularly those about human research and data usage, 5. The data cannot be used for profit or commercial purposes, 6. If required by law, the sharing must have approval from ethical committees or other relevant authorities. Contact point: claudia.kuehni@unibe.ch.
has funding organization: Swiss Personalized Health Network
has inclusion criteria: Enrolled in SPAC for the SPAC data, or patients who visited the pneumology clinics between the period and at the age described above and did neither participate in the SPAC study nor refuse the general consent for the non-SPAC data.
has number of patients: 15268
has principal investigator: Claudia Kuehni
has project partner: Universitats-Kinderspital Zurich
has project partner: Inselspital - Universitatsspital Bern
has project partner: Luzerner Kantonsspital
has publication: https://doi.org/10.1183/23120541.00050-2018
has publication: ppul.27499
has ratio of sexes: 1.53 (SPAC data)
has ratio of sexes: 1.51 (Combined dataset)
has study type: Observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:56.654887+00:00
metadata modified: 2026-03-03T17:18:04.155479+00:00

accessRights
type: RightsStatement
description: RESTRICTED

Analysis of low value care indicators
type: Resource
type: Dataset
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: HRO - Human Research Ordinance
health category: data on factors impacting on health, including socioeconomic, environmental and behavioural determinants of health
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: electronic health data from EHRs
max typical age: 115
min typical age: 18
number of records: 129853
number of unique individuals: 129853
access rights: RESTRICTED
conforms to: https://www.biomedit.ch/rdf/sphn-schema/lucid/2024/1
description: A subset of the LUCID registry including only concepts required for monitoring on low value care indicators.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: HealthcareInformationSystem
temporal: PeriodOfTime
  end date: 2025-05-13
  start date: 2014-01-01
theme: HEAL
theme: Quality of Care
version: 1.0
has age range: 18 - 115
has consent type: General consent
has data provider: Universitatsspital Basel
has data provider: Inselspital - Universitatsspital Bern
has data provider: Centre hospitalier universitaire vaudois
has data provider: Universitatsspital Zurich
has data provider: Hopitaux universitaires de Geneve
has data type: Financial Costs
has data type: Clinical Routine
has data type: PROMs
has data use restriction: Use of the data set is currently restricted to member institutions of the project consortium.
has inclusion criteria: For included patients, only administrative cases (stays) with the following criteria should be included. If a given administrative case follows the criteria, all its associated data for the list of reused SPHN concepts should be included: Age >= 18 years at admission, Inpatient setting, Acute care (Hospital stay "Class A"), Period: from the beginning of hospital stay after 01/01/2014 until the current day of cohort creation, Length of stay >= 24h consecutively in at least one units/subunits of interest. For included patients, patient-associated data from the following concepts should be included regardless of their association with an administrative case (i.e. including before 2014 and regardless of the unit): Allergy, Administrative Sex, Birth Date, Death, Billed Diagnosis.
has number of patients: 129853
has ratio of sexes: 1.34
has study type: Observational
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:18.265286+00:00
metadata modified: 2026-03-03T17:16:22.667324+00:00

accessRights
type: RightsStatement
description: RESTRICTED

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language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
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metadata modified: 2026-03-03T17:14:52.501882+00:00

accessRights
type: RightsStatement
description: RESTRICTED

VOID Dataset associated with the Distribution
type: Dataset
access rights: accessRights
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
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accessRights
type: RightsStatement
description: RESTRICTED

SwissPedHealth MOMIC (2025.1)

Personalized, data-driven prediction and assessment of Infection related outcomes in Swiss ICUs
type: Dataset
type: Resource
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: electronic health data from EHRs
health category: data on pathogens that impact human health
min typical age: 18
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2025.1
conforms to: IICU RDF Schema 2025.1
description: Infections show a range of diverse phenotypes with variable impact on clinical course and outcomes. Our NDS proposal focuses on this heterogeneity within critically ill patients with severe infections using a combined clinical- and data-driven approach for an improved personalized assessment, characterization and outcome prediction on patients with infections. We will integrate rich and diverse data sources to predict outcomes relevant in the lighthouse project and nested projects
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Case Report Form
source: Omics Facility
source: HealthcareInformationSystem
temporal: PeriodOfTime
  end date: 2025-12-31
  start date: 2019-08-01
theme: NCIT C53511
theme: NCIT C16003
theme: NCIT C44272
theme: HEAL
theme: Sepsis (disorder)
theme: Electronic Case Report Form
version: 1.0
has age range: >= 18 years
has consent type: General consent
has data provider: Universitatsspital Basel
has data provider: Swiss Pathogen Surveillance Platform
has data provider: Centre hospitalier universitaire vaudois
has data provider: Hopitaux universitaires de Geneve
has data provider: Inselspital - Universitatsspital Bern
has data provider: Universitatsspital Zurich
has data type: Pathogen Information
has data type: Clinical Routine
has data type: eCRF
has data use restriction: Use of the dataset is currently restricted to member institutions of the project consortium.
has exclusion criteria: Non-ICU patients, patients under 18 years of age, or patients who have declined consent for data use
has inclusion criteria: ICU patients aged 18 and older who have provided general consent (GC) or whose consent status for data use is unknown
has short title: IICU Dataset
has study type: Retrospective cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:34.313852+00:00
metadata modified: 2026-03-03T17:15:36.609272+00:00

Concept Availability associated with the distribution
type: ConceptAvailability
access rights: accessRights
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
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has publication: pharmaceutics16010013
has publication: pharmaceutics13101596
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MOMIC (Phase 3)
type: Resource
type: Dataset
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
health category: data on factors impacting on health, including socioeconomic, environmental and behavioural determinants of health
health category: human genetic, epigenomic and genomic data
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: OHMD
health category: electronic health data from EHRs
max typical age: 20
min typical age: 0
access rights: RESTRICTED
description: RNA/DNA/Metabolomics/Proteomics/Transcriptomics Data (Phase 3)
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Research Laboratory
source: Data Repository
source: Omics Facility
temporal: PeriodOfTime
  end date: 2025-09-01
  start date: 2022-07-01
theme: HEAL
theme: NCIT C205365
theme: Personalized Medicine
version: 1.0
has age range: 0 - 20 years
has consent type: prospective, patient informed consent
has data provider: Clinical Proteotype Analysis Center
has data provider: Health 2030 Genome Center
has data provider: Swiss Multi-Omics Center
has data provider: Clinical Metabolomics Analysis Center
has data type: Omics
has data use restriction: Access to MOMIC phase 3 specific data is regulated through its corresponding DPCA
has exclusion criteria: Insufficient quality of language communication or cognitive capacity to understand study procedures and to give consent
has exclusion criteria: Age > 20 years
has exclusion criteria: Documented refusal of MOMIC informed consent
has inclusion criteria: All pediatric divisions
has inclusion criteria: Male and female
has inclusion criteria: In- and outpatients
has inclusion criteria: Patients attended in pediatric hospitals
has inclusion criteria: Age < 20 years
has inclusion criteria: acceped and signed MOMIC informed consent
has short title: Phase 3 RDF Multiomics Dataset
has study type: Research project involving human subjects, prospective, observational study (Phase 3)
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:08.343252+00:00
metadata modified: 2026-03-03T17:16:11.605717+00:00

Distribution of SwissPedHealth Nested Project 1: Anthropometric routine data in Switzerland (SwissPedGrowth)
type: Distribution
type: Resource
access rights: accessRights
format: CSV
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/csv
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:51.199690+00:00
metadata modified: 2026-03-03T17:15:51.199690+00:00

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-b5fcb3da-ffbb-40e5-b87d-17d62241ffd3
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https://biomedit.ch/rdf/sphn-resource/sphn-metacat-655e7309-f224-41b5-bcb2-7fb21d93a5c5
type: Individual
fn: Marie Mean

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

ADONIS 2024.1 Retrospective Cohort Phase 3 Clinical Data (2024.1)

VOID Dataset associated with the distribution
type: Dataset
access rights: accessRights
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
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Distribution of Personalized, data-driven prediction and assessment of Infection related outcomes in Swiss ICUs
type: Distribution
type: Resource
access rights: accessRights
format: PARQUET
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/plain
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metadata identifier: identifier
metadata issued: 2026-03-03T17:15:35.177837+00:00
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accessRights
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description: RESTRICTED

Low Value of Care in Hospitalized Patients - a National Data Stream on Quality of Care in Swiss university hospitals (LUCID)
type: Resource
type: Catalog
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
abstract: National Data Streams (NDS) are set to play an important role in making Swiss healthcare more effective, cost-efficient, data-driven, and evidence-based. Our project focuses on hospital inpatient quality of care and will attempt to find ways of improving healthcare processes in Swiss hospitals. As both the number of patients and the cost of acute care are expected to increase in the future, avoiding healthcare waste, while satisfying inpatients expectations, is key for the Swiss health system. Since value-based healthcare aims at preventing low-value healthcare processes while keeping costs under control through a patient-centered outcome orientation, and within an evidence-based and data-informed framework, our broad objective is to build an NDS permitting to monitor and study the quality of care in Swiss hospitals using existing hospital data and Patient Reported Outcomes (PROs). While the current project will focus on hospitalized patients in medicine who represent the largest part of hospitalizations, the project's infrastructure and processes are applicable for hospitalized patients from other specialties.
access rights: accessRights
conforms to: https://www.biomedit.ch/rdf/sphn-schema/lucid/2024/1
conforms to: LUCID RDF Schema 2025.1
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:16:17.627399+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:16:17.627399+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: HealthcareInformationSystem
temporal: PeriodOfTime
  end date: 2025-05-13
  start date: 2014-01-01
keyword: LUCID-2025.1
keyword: LUCID-2024.1
keyword: LUCID-catalog
theme taxonomy: Quality of Care
theme taxonomy: HEAL
version: 1.0
has acronym: LUCID
has age range: 18 - 115 years
has consent type: General consent
has data provider: Universitatsspital Basel
has data provider: Hopitaux universitaires de Geneve
has data provider: Centre hospitalier universitaire vaudois
has data provider: Inselspital - Universitatsspital Bern
has data provider: Universitatsspital Zurich
has data type: Clinical Routine
has data type: PROMs
has data type: Financial Costs
has data use restriction: Use of the data set is currently restricted to member institutions of the project consortium.
has funding organization: Swiss Personalized Health Network
has funding organization: Personalized Health and Related Technologies
has inclusion criteria: For included patients, only administrative cases (stays) with the following criteria should be included. If a given administrative case follows the criteria, all its associated data for the list of reused SPHN concepts should be included: Age >= 18 years at admission, Inpatient setting, Acute care (Hospital stay "Class A"), Period: from the beginning of hospital stay after 01/01/2014 until the current day of cohort creation, Length of stay >= 24h consecutively in at least one units/subunits of interest. For included patients, patient-associated data from the following concepts should be included regardless of their association with an administrative case (i.e. including before 2014 and regardless of the unit): Allergy, Administrative Sex, Birth Date, Death, Billed Diagnosis.
has number of patients: 129853
has principal investigator: Guillaume Obozinski
has principal investigator: Marie Mean
has project partner: Hopitaux universitaires de Geneve
has project partner: Swiss Data Science Center
has project partner: Universitatsspital Basel
has project partner: Inselspital - Universitatsspital Bern
has project partner: Universitatsspital Zurich
has project partner: Centre hospitalier universitaire vaudois
has publication: bmjopen-2024-089662
has ratio of sexes: 1.34
has study type: Observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:17.627399+00:00
metadata modified: 2026-03-03T17:16:22.840723+00:00

Cohort demonstrator: Full integration of a national cohort into the SPHN infrastructure
type: Catalog
type: Resource
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: de
applicable legislation: Cantonal data protection laws
abstract: The Cohort Demonstrator project facilitates the secure and efficient transfer of routine clinical data from multiple University Hospital Clinical Data Warehouses (CDWHs) to the Swiss Transplant Cohort Study (STCS). To facilitate patient selection and linkage, the project implemented dedicated tools (IDEAL) for managing study participants. IDEAL (and Horus, at CHUV) supports the identification and secure linking of patient identifiers between the study and the hospital, ensuring compliance with data protection requirements and enabling seamless downstream data transfer. A key outcome of the project is the development of the Cohort Hospital Integration Layer (CHIL). CHIL ingests multisite RDF data using consistent terminology across hospitals and provides a user-friendly interface for querying study-specific datasets. This data is then integrated into the STCS research database, enhancing the data granularity, completeness, and usability of STCS data, unlocking new possibilities for real-world data analyses, AI-based research, and embedded sub-studies. This project also highlights the need for harmonised procedures and infrastructure across institutions to support sustainable data sharing practices. The solutions developed are designed to be reusable and adaptable, offering a blueprint for other cohorts and research initiatives aiming to harness routine clinical data across institutional boundaries.
access rights: accessRights
conforms to: SPHN RDF Schema 2024.2
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:17:45.418303+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:17:45.418303+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: ClinicalDataPlatform
temporal: PeriodOfTime
  end date: 2025-04-09
  start date: 2007-12-31
theme taxonomy: data integration
theme taxonomy: clinical data
theme taxonomy: Transplant Study
theme taxonomy: Data integration and warehousing
theme taxonomy: HEAL
version: 1.0
has acronym: Cohort Demonstrator
has age range: 8 - 95
has consent type: Informed Consent
has data provider: Universitatsspital Basel
has data provider: Centre hospitalier universitaire vaudois
has data type: Clinical Routine
has data type: Longitudinal
has data use restriction: STCS data enriched with hospital CDWH data, will be available to researchers following approval of an application ('nested STCS project') by the STCS Data Center, STCS scientific committee, data governance board, and the competent ethics committee. The data provider agreed to the re-use of the CDWH data by agreeing with the DTUA/DTPA between Hospital (as the data provider), STCS (as the data recipient), and BioMedIT network (as the data processor).
has funding organization: Swiss Personalized Health Network
has inclusion criteria: STCS patients (solid organ transplants recipients) at USB, CHUV and Inselspital
has number of patients: 2927
has principal investigator: Michael Koller
has project partner: Inselspital - Universitatsspital Bern
has project partner: Centre hospitalier universitaire vaudois
has project partner: Universitatsspital Basel
has project partner: Swiss Transplant Cohort Study
has ratio of sexes: 1.83 (1791 Male, 978 Female). Note: gender information missing for 158 patients
has study type: Observational long term cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:45.418303+00:00
metadata modified: 2026-03-03T17:17:51.704655+00:00

Distribution of INSEL clinical routine dataset (2025.1)
type: Distribution
type: Resource
access rights: accessRights
format: RDF TRIG
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: application/trig
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:14:57.332175+00:00
metadata modified: 2026-03-03T17:15:01.567822+00:00

HUG Clinical Routine Dataset (2025.1)
type: Resource
type: Dataset
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
applicable legislation: HRO - Human Research Ordinance
has coding system: GTIN
has coding system: https://www.bfs.admin.ch/news/de/2024-0148
has coding system: ORDO
has coding system: ATC
has coding system: UCUM
has coding system: CHOP
has coding system: LOINC
has coding system: www.uid.admin.ch
has coding system: SNOMED CT
has coding system: NANDA
hdab: Hopitaux Universitaires Geneve (HUG)
health category: electronic health data from EHRs
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
max typical age: 109
min typical age: 0
number of records: 113194
number of unique individuals: 113194
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2025.1
description: This dataset describes the data, which is available in SPHN format for HUG.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Healthcare Information System
source: Clinical Data Platform
temporal: PeriodOfTime
  end date: 2025-09-20
  start date: 2018-01-01
keyword: SPHN-Federated-Clinical-Routine-Data-2025.1-HUG-dataset
keyword: DEAS-2025.1-HUG-dataset
theme: HEAL
theme: NCIT C165830
version: 1.0
has age range: 0 - 109
has consent type: General Consent
has data provider: Hopitaux universitaires de Geneve
has data type: Clinical Routine
has data use restriction: Access is given by internal validation pursuant to institutional guidelines and processes and approval by the Data Access Body.
has inclusion criteria: Data available in the Clinical Data Platform of all patients with administrative cases since 2018 and general consent is accepted.
has number of patients: 113194
has ratio of sexes: 0.85
has short title: Clinical Routine Dataset
has study type: Retrospective observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:14:50.659555+00:00
metadata modified: 2026-03-03T17:14:55.345449+00:00

SwissPedHealth Nested Project 1: Anthropometric routine data in Switzerland (SwissPedGrowth)
type: Resource
type: Catalog
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: HRO - Human Research Ordinance
abstract: The SwissPedGrowth dataset is a comprehensive collection of routinely gathered pediatric clinical data from participating Swiss children's hospitals. It includes anthropometric measurements (height, weight, head circumference), clinical parameters, and laboratory values obtained from both inpatient and outpatient visits. Data are collected from January 2017 to December 2025 and are enriched with socioeconomic information (Swiss-SEP) via linkages with federal datasets (Swiss National Cohort, FSO). This pseudonymized dataset - excluding patients who rejected general consent - aims to use multi-institutional pediatric EHR data from Switzerland (SwissPedHealth) and compare them internationally to assess the feasibility of retrieving anthropometric data from EHRs in Switzerland, investigate data quality and validity, and answer simple research questions.
access rights: accessRights
conforms to: SPHN RDF Schema 2024.2
conforms to: https://www.biomedit.ch/rdf/sphn-schema/sph/2025/1
conforms to: SPH RDF Schema 2024.1
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:15:48.413992+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:15:48.413992+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: SwissPedHealth Data Repository (NDS SPH Registry)
temporal: PeriodOfTime
  end date: 2025-12-31
  start date: 2017-01-01
theme taxonomy: HEAL
theme taxonomy: Clinical Data
version: 1.0
has acronym: SwissPedGrowth
has age range: 0 - 20 years
has consent type: General consent
has data provider: Inselspital - Universitatsspital Bern
has data provider: Ostschweizer Kantonspital
has data provider: Luzerner Kantonsspital
has data provider: NDS SPH Registry
has data provider: Universitats-Kinderspital beider Basel
has data provider: Hopitaux universitaires de Geneve
has data provider: Universitats-Kinderspital Zurich
has data provider: Centre hospitalier universitaire vaudois
has data type: Clinical routine data
has data use restriction: Access to the NDS data is regulated through the SwissPedHealth infrastructure consortium agreement V2.0 18.11.2022. As brief explanation: · When planning to carry out a project using data from the SwissPedHealth NDS, you will need to set up a data project consortium agreement (DPCA) involving all participating partners. Note that this should include "internal" SwissPedHealth partners and "external" partners, i.e. those not part of the SwissPedHealth NDS Infrastructure Consortium. · For the DPCA, projects should consider the SwissPedHealth general terms and conditions (GTCs) and, wherever possible, try to adopt them without or with minor deviations. This will facilitate the process of legal review and signing for all "internal" partners, since the GTCs will have already been reviewed as part of the development and adoption process. If deviations are required, these will need to be specified in the DPCA, and should be highlighted during the legal review of the DPCA. · Note that the following additional documentation will be required to complete the DPCA: Project funding application/Proof of funding, Study protocol and Ethical approval. In case the latter is not available it should be added as soon as available, and the DPCA cannot be executed without evidence of ethical review and approval. All parts highlighted in yellow in the DPCA template need to be completed/amended. · All DPCAs will need to incorporate a data transfer and use agreement (DTUA) and data transfer and processing agreement (DTPA). These are included in the SwissPedHealth DPCA template, reflecting SPHN requirements. Please note that adaptations may be necessary in cases where the Data Processors are not one of the BioMedIT nodes (SENSA - Lausanne, SciCORE - Basel, SIS - Zurich). For the DTUA section, each project will need to describe and depict the planned data flow as well as data and metadata to be transferred. All parts highlighted in yellow in the DTUA and DTPA templates need to be completed/…
has exclusion criteria: Patients treated between 01.01.2017-28.02.2023: if active general consent refusal was given
has exclusion criteria: thus those informed are included. Patients treated after 28.02.2023: if general consent was not signed.
has funding organization: Personalized Health and Related Technologies
has funding organization: Swiss Personalized Health Network
has inclusion criteria: All children and adolescents (<20 years) who visited participating SwissPedHealth clinics (both inpatient and outpatient) during the study period
has number of patients: 97655
has principal investigator: Claudia Kuehni
has project partner: The Swiss National Cohort
has project partner: Universitats-Kinderspital Zurich
has project partner: Luzerner Kantonsspital
has project partner: Hopitaux universitaires de Geneve
has project partner: Centre hospitalier universitaire vaudois
has project partner: Ostschweizer Kantonspital
has project partner: Inselspital - Universitatsspital Bern
has project partner: NDS SPH Registry
has project partner: Universitats-Kinderspital beider Basel
has publication: s.3834
has ratio of sexes: 1.17
has study type: Observational, retrospective cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:48.413992+00:00
metadata modified: 2026-03-03T17:15:51.569255+00:00

accessRights
type: RightsStatement
description: RESTRICTED

Code Frequency associated with the distribution
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access rights: accessRights
language: en
license: https://creativecommons.org/licenses/by/4.0
publisher: Swiss Personalized Health Network (SPHN)
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Distribution of Genomics and Metabolomics Data of a Healthy Children Cohort
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LUCID 2025.1

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Therapy-related myeloid neoplasms after cytotoxic treatment
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health category: human genetic, epigenomic and genomic data
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description: General information on all patients allowing to identify t-MN patients
issued: 2026-02-24T14:27:40
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publisher: Swiss Personalized Health Network (SPHN)
source: Clinical Registry
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temporal: PeriodOfTime
  end date: 2024-06-30
  start date: 2005-01-01
keyword: t-MNs-2023.1-dataset01
keyword: t-MNs-2023.1-Neoplasms-after-cytotoxic-treatment-cohort
theme: Chemotherapy-Related Leukemia
theme: Acute Myeloid Leukemia Post Cytotoxic Therapy
theme: Chemotherapy
theme: Myelodysplastic/Myeloproliferative Neoplasm Post Cytotoxic Therapy
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theme: Myeloid Neoplasm Post Cytotoxic Therapy
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has data use restriction: (i) Approved protocol, (ii) DTUA with CHUV, HUG, Insel and USB, and (iii) approval of Main Project Leader Prof. Sabine Blum based on a joint decision with project parties. Contact: Sabine.Blum@chuv.ch
has exclusion criteria: Patients younger than 18 years old at time of protocol approval
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has inclusion criteria: Cancers patients treated with chemotherapy or radiotherapy
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has short title: Neoplasms after cytotoxic treatment dataset
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Distribution of Drug Plasma Level Data and associated Clinical Data of Gentamicin, Vancomycin, Voriconazole
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https://biomedit.ch/rdf/sphn-resource/sphn-metacat-be08871e-47f4-421a-bfe4-9ad2c425c9a3
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fn: Jan Bonhoeffer

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Cohort Demonstrator USB dataset (2012-2024)
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applicable legislation: HRO - Human Research Ordinance
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applicable legislation: FADP - Federal Act on Data Protection
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access rights: RESTRICTED
conforms to: SPHN RDF Schema 2024.2
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issued: 2026-02-24T14:27:40
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license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
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  start date: 2012-01-01
theme: data integration
theme: clinical data
theme: Transplant Study
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has age range: 19 - 93
has consent type: Informed Consent
has data provider: Universitatsspital Basel
has data type: Clinical Routine
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has ratio of sexes: 1.82 Male (824 Male, 452 Female)
has study type: Observational long term cohort study
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SwissPedDW Busulfan substudy (2024.1)

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issued: 2026-02-24T14:27:40
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Neoplasm After Cytotoxic Treatment Cohort (2023.1)

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-e1f8550d-c0fd-4d21-859d-e134b771d25a
type: Individual
fn: Prof. Luregn Schlapbach

electronic health data from EHRs
label: Electronic health data from EHRs

Distribution of Genomics and Metabolomics Data of a Healthy Children Cohort
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https://biomedit.ch/rdf/sphn-resource/sphn-metacat-6e26ff70-91c4-48b1-87f4-7bd3bf37c57b
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fn: Eric Giannoni

Distribution of Drug Plasma Level Data and associated Clinical Data of Fludarabine
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Distribution of Multi Omics Data (Phase 2)
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format: CSV
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
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publisher: Swiss Personalized Health Network (SPHN)
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metadata issued: 2026-03-03T17:16:01.970151+00:00
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accessRights
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accessRights
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accessRights
type: RightsStatement
description: RESTRICTED

CHUV Clinical Routine Dataset (2025.1)

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-47ca9166-b4f7-4bc7-8b6b-285973542358
type: Individual
fn: Kinderspital Zurich (KISPI), Margarete von Wantoch

Distribution of MOMIC (Phase 3)
type: Distribution
type: Resource
access rights: accessRights
format: CSV
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/plain
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:10.164324+00:00
metadata modified: 2026-03-03T17:16:10.164324+00:00

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

Distribution Profile

Distribution of Paediatric clinical hospital dataset
type: Distribution
type: Resource
access rights: accessRights
format: RDF TURTLE
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/turtle
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:21.028408+00:00
metadata modified: 2026-03-03T17:17:23.838773+00:00

HUG Clinical Routine Dataset (2025.1)

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

Distribution of MOMIC (Phase 3)
type: Distribution
type: Resource
access rights: accessRights
format: TXT
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/plain
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:11.402560+00:00
metadata modified: 2026-03-03T17:16:11.402560+00:00

accessRights
type: RightsStatement
description: RESTRICTED

Distribution of Therapy-related myeloid neoplasms after cytotoxic treatment
type: Distribution
type: Resource
access rights: accessRights
format: RDF TURTLE
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/turtle
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:09.012341+00:00
metadata modified: 2026-03-03T17:17:11.453798+00:00

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

Distribution of Cohort Demonstrator USB dataset (2012-2024)
type: Distribution
type: Resource
access rights: accessRights
format: CSV
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/csv
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:48.128422+00:00
metadata modified: 2026-03-03T17:17:48.128422+00:00

Distribution of Multi Omics Data (Phase 2)
type: Distribution
type: Resource
access rights: accessRights
format: TXT
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/plain
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:03.106746+00:00
metadata modified: 2026-03-03T17:16:03.106746+00:00

Distribution of SwissPedHealth Nested Project 1: Anthropometric routine data in Switzerland (SwissPedGrowth)
type: Distribution
type: Resource
access rights: accessRights
format: RDF N QUADS
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: application/nquads
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:50.190310+00:00
metadata modified: 2026-03-03T17:15:50.190310+00:00

accessRights
type: RightsStatement
description: RESTRICTED

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-14802582-de2f-4ac7-a7c8-83ea23bc8987
type: Individual
fn: Jan Bonhoeffer

KISPI Clinical Routine Dataset (2025.1)

accessRights
type: RightsStatement
description: RESTRICTED

SwissPedDW Main dataset (2024.1)

accessRights
type: RightsStatement
description: RESTRICTED

Distribution of Cohort Demonstrator CHUV dataset (2007-2025)
type: Distribution
type: Resource
access rights: accessRights
format: JSON
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/plain
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:51.317835+00:00
metadata modified: 2026-03-03T17:17:51.317835+00:00

Infection Radar (INFRA)
type: Catalog
type: Resource
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
abstract: Leveraging the potential of the routine health data for translational clinical data-driven research projects and real-world use cases through embedding the SPHN principles of interoperability and system permeability. The principal goal of the proposed INFRA project is to integrate the different data types, e.g. laboratory, physiological values, and clinical symptoms and visualize the patients' current status. It will be developed aiming at an improvement of the detection of risk factors and patterns of surgical infections and a multidimensional visualization of severity and periodicity.
access rights: accessRights
conforms to: SPHN RDF Schema 2025.1
conforms to: SPHN RDF Schema 2024.2
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:17:29.181319+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:17:29.181319+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: ClinicalDataPlatform
temporal: PeriodOfTime
  end date: 2024-12-31
  start date: 2020-01-01
theme taxonomy: Infection
theme taxonomy: HEAL
version: 1.0
has acronym: INFRA
has age range: 0 - 113
has consent type: General Consent
has data provider: Inselspital - Universitatsspital Bern
has data type: Clinical Routine
has data use restriction: In accordance with a Data Governance Working Group strategy considering institutional data governance and researchers' interest in compliance with Swiss legal and ethical regulations. Access is given upon approval of the Data Givernance Commission Insel Gruppe, directorate of research at Inselgruppe AG. Contact point: Forschungssupport.DLF@insel.ch
has exclusion criteria: The exclusion criteria that were applied for excluding patients from the project. These are specific characteristics or attributes of members of the target population which render them unsuitable to contribute data to the project. For the observational study "Prediction of postoperative infections by strategic data imputation and explainable machine learning", the data from patients with a documented rejection for the use of healthcare data were excluded.
has funding organization: Swiss Personalized Health Network
has inclusion criteria: The inclusion criteria that were applied for including patients as viable data points into the project. These are specific characteristics or attributes that members of the target population must possess such that their data can be considered for the project. While the goal was to build a generalisable semantic layer in our cDWH, we didn't restrict the inclusion, but tried to integrate a broad patient cohort to represent the comprehensive Insel patient cohort. All valid patients records available in the Insel Data Platform with a discharge between 2020-01-01 - 2024-12-31 were included into the project-specific data mart in order to build a project-specific ontology and test the validation rules. For the observational study "Prediction of postoperative infections by strategic data imputation and explainable machine learning", a data set of 91,794 patient cases with surgeries recorded in the Bern University Hospital from May 2014 to September 2022 was analysed, Inclusion criteria: Presence of a surgical procedure and at least one laboratory value in the first 30 days after surgery. For the Data Driven Diagnosis Sepsis Cohort, the cases of the patients treated at Insel Group 2020-01-01 - 2024-12-31 were used for the calculation of the SOFA and Phoenix score.
has number of patients: 726167
has principal investigator: Olga Endrich
has project partner: Centre hospitalier universitaire vaudois
has project partner: Hopitaux universitaires de Geneve
has project partner: University of Geneva
has publication: v1
has ratio of sexes: 0.94
has study type: Observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:29.181319+00:00
metadata modified: 2026-03-03T17:17:31.093481+00:00

t-MNs 2023.1

Distribution of Clinical gait analysis data for cerebral palsy and toe walking patients
type: Distribution
type: Resource
access rights: accessRights
format: CSV
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/csv
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:18:10.337481+00:00
metadata modified: 2026-03-03T17:18:10.337481+00:00

Concept Availability associated with the distribution
type: ConceptAvailability
access rights: accessRights
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
class partition:
  class: BilledDiagnosis
  entities: 1945087
  has average count: 19.61169
  has hospital: CHUV
  has max count: 794
  has min count: 1
class partition:
  class: MicroorganismIdentificationLabTest
  entities: 78
  has average count: 19.5
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  has max count: 40
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class partition:
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class partition:
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  has average count: 173.0
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  has max count: 173
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class partition:
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class partition:
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class partition:
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class partition:
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class partition:
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class partition:
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class partition:
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class partition:
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class partition:
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  has average count: 2.934565
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  has max count: 109
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class partition:
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  has average count: 5.5
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class partition:
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class partition:
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class partition:
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  has average count: 173.0
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class partition:
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class partition:
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class partition:
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class partition:
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class partition:
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class partition:
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class partition:
  class: Assessment
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  has code frequency:
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      class: http://snomed.info/id/273531005
      entities: 2324
      has hospital: CHUV
    class partition: Visual analog pain scale (assessment scale)
      class: http://snomed.info/id/273904000
      entities: 556
      has hospital: CHUV
    class partition: Katz activities of daily living (assessment scale)
    class partition: Mini-mental state examination (assessment scale)
    class partition: Richmond Agitation Sedation Scale (assessment scale)
    class partition: Mini-Cog brief cognitive screening test (assessment scale)
    class partition: Finnegan Neonatal Abstinence Scoring Tool (assessment scale)
    class partition: Paediatric Index of Mortality 2 (assessment scale)
    class partition: National Early Warning Score (assessment scale)
    class partition: Confusion Assessment Method (assessment scale)
    class partition: Eastern Cooperative Oncology Group scale for physical assessment (assessment scale)
    class partition: Apgar score (assessment scale)
    class partition: Frailty Index (assessment scale)
    class partition: Paediatric Index of Mortality 3 (assessment scale)
    class partition: Glasgow coma scale (assessment scale)
    class partition: Montreal Cognitive Assessment version 8.1 (assessment scale)
    class partition: Montreal Cognitive Assessment version 7.1 (assessment scale)
    class partition: Verbal Rating Scale for pain intensity (assessment scale)
    class partition: Nutritional Risk Screening 2002 (assessment scale)
    class partition: Abbreviated injury scale (assessment scale)
    class partition: Braden Scale (assessment scale)
    class partition: Simplified Acute Physiology Scale III (assessment scale)
    class partition: Charlson Comorbidity Index (assessment scale)
    class partition: Neonatal Infant Pain Scale (assessment scale)
    class partition: Instrumental activities of daily living (assessment scale)
    class partition: Tinetti assessment scale (assessment scale)
    class partition: Geriatric depression scale 4 item form (assessment scale)
    class partition: Simplified acute physiology scale II (assessment scale)
    class partition: Sequential Organ Failure Assessment (assessment scale)
  has hospital: CHUV
  has max count: 404
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metadata identifier: identifier
metadata issued: 2026-03-03T17:14:48.104907+00:00
metadata modified: 2026-03-03T17:14:48.104907+00:00

accessRights
type: RightsStatement
description: RESTRICTED

Therapy-related myeloid neoplasms after cytotoxic treatment
type: Resource
type: Catalog
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
applicable legislation: HRO - Human Research Ordinance
abstract: Therapy-related myeloid neoplasms (t-MNs) are hematologic cancers that are caused by treatments administered for another primary cancer and are among the most feared side effects of chemotherapy or radiotherapy. Incidence of t-MNs is of the order of a few percent, which makes them difficult to study in a single hospital. Here, we take advantage of the Swiss Personalized Health Network initiative, and in particular the Swiss Personalized Oncology network, to screen a large population of patients (100,000 to 200,000) that have received chemotherapy in four university hospitals in Switzerland. We leverage the SPHN infrastructure to be able to access their data quickly and securely and detect possible t-MNs. After local validation and data completion for the 100-200 expected cases, we will be able to calculate t-MN risk and describe t-MN patient characteristics and outcomes. Since results will be based on real-world data collected in Switzerland with local standard of care and clinical context, the results will be directly relevant to Swiss patients, authorities, as well as the scientific and medical community.
access rights: accessRights
conforms to: SPHN RDF Schema 2023.2
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:17:07.230824+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:17:07.230824+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: HealthcareInformationSystem
source: Clinical Registry
temporal: PeriodOfTime
  end date: 2024-06-30
  start date: 2005-01-01
keyword: t-MNs-2023.1
keyword: t-MNs-catalog
theme taxonomy: Myeloid Neoplasm Post Cytotoxic Therapy
theme taxonomy: Myelodysplastic/Myeloproliferative Neoplasm Post Cytotoxic Therapy
theme taxonomy: Chemotherapy
theme taxonomy: Chemotherapy-Related Leukemia
theme taxonomy: HEAL
theme taxonomy: Acute Myeloid Leukemia Post Cytotoxic Therapy
version: 1.0
has acronym: DEM03
has age range: 18 - 90+
has consent type: General Consent (with article 34)
has data provider: Hopitaux universitaires de Geneve
has data provider: Inselspital - Universitatsspital Bern
has data provider: Centre hospitalier universitaire vaudois
has data provider: Universitatsspital Basel
has data type: Clinical Routine
has data use restriction: (i) Approved protocol, (ii) DTUA with CHUV, HUG, Insel and USB, and (iii) approval of Main Project Leader Prof. Sabine Blum based on a joint decision with project parties. Contact: Sabine.Blum@chuv.ch
has exclusion criteria: Patients with documented refusal of subsequent use of their data for research
has exclusion criteria: Patients younger than 18 years old at time of protocol approval
has funding organization: Swiss Personalized Health Network
has inclusion criteria: Cancers patients treated with chemotherapy or radiotherapy
has number of patients: 205473
has principal investigator: Sabine Blum
has ratio of sexes: 1.05
has study type: Retrospective cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:07.230824+00:00
metadata modified: 2026-03-03T17:17:11.775869+00:00

accessRights
type: RightsStatement
description: RESTRICTED

EFO

Multi Omics Data (Phase 2)
type: Dataset
type: Resource
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: HRO - Human Research Ordinance
health category: OHMD
health category: electronic health data from EHRs
health category: data on factors impacting on health, including socioeconomic, environmental and behavioural determinants of health
health category: human genetic, epigenomic and genomic data
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
max typical age: 16
min typical age: 0
number of records: 200
number of unique individuals: 200
access rights: RESTRICTED
description: The dataset comprises both raw and processed data across various omics types, including RNA, DNA, metabolomics, proteomics, and transcriptomics. These samples, originating from the retrospective phase (Phase 2) of the project, were biobanked by the SwissPedHealth Lighthouse Project, with purified materials prepared by the Lighthouse team. The samples were subsequently sent to the Swiss Multi-Omics Center (SMOC) for processing, such as DNA sequencing. The resulting multi-omics data were transferred to BioMedIT, typically in formats such as FASTQ. Both raw and processed data are stored within the BioMedIT infrastructure
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Data Repository
source: Omics Facility
theme: HEAL
theme: Personalized Medicine
theme: NCIT C205365
version: 1.0
has age range: 0 - 16 years (for the Immune cohort); N/A (at the moment for the other cohorts)
has consent type: Consent for reuse of samples must be available.
has data provider: Health 2030 Genome Center
has data provider: Clinical Metabolomics Analysis Center
has data provider: Clinical Proteotype Analysis Center
has data provider: Swiss Multi-Omics Center
has data type: Omics
has data use restriction: Samples and data of children with extreme phenotypes in Phase 2 arise from existing cohorts where consent to perform omics in stored biospecimens are already available. Conditions for data reuse must be determined with the cohort's responsible PI (not within SwissPedHealth)
has exclusion criteria: Samples with a documented refusal for further use is excluded
has inclusion criteria: Phase 2 Cohort (metabolic cohort: elevated homocysteine in plasma)
has number of patients: 200
has ratio of sexes: 89:61 (the number is available for the metabolic cohort)
has short title: Phase 2 Multiomics Dataset
has study type: Retrospective study from existing cohort (Phase 2)
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:59.900676+00:00
metadata modified: 2026-03-03T17:16:03.253707+00:00

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-645e28a8-d0b3-4eb6-aba8-819721d488bb
type: Individual
fn: Olivier Michielin

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

USB Clinical Routine Dataset (2025.1)
type: Dataset
type: Resource
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
has coding system: www.uid.admin.ch
has coding system: SNOMED CT
has coding system: CHOP
has coding system: LOINC
has coding system: GTIN
has coding system: https://www.bfs.admin.ch/news/de/2024-0148
has coding system: ATC
has coding system: UCUM
health category: electronic health data from EHRs
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
max typical age: 115
min typical age: 0
number of records: 145366
number of unique individuals: 145366
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2025.1
description: This dataset describes the data, which is available in SPHN format for USB.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Clinical Data Platform
source: Healthcare Information System
temporal: PeriodOfTime
  end date: 2025-06-27
  start date: 2017-07-05
keyword: SPHN-Federated-Clinical-Routine-Data-2025.1-USB-dataset
keyword: DEAS-2025.1-USB-dataset
theme: HEAL
theme: NCIT C165830
version: 1.0
has age range: 0-115
has consent type: General Consent
has data provider: Universitatsspital Basel
has data type: Clinical Routine
has data use restriction: Access is given by internal validation pursuant to institutional guidelines and processes and approval by the Data Access Body. A request can be made using the DKFonline form (exceptional) https://dolphin.dkfbasel.ch/contactform#en
has exclusion criteria: -
has inclusion criteria: Data available in the Clinical Data Platform of all patients with administrative cases since 2018 and general consent is accepted.
has number of patients: 145366
has ratio of sexes: 0.89
has short title: Clinical Routine Dataset
has study type: Retrospective observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:09.397985+00:00
metadata modified: 2026-03-03T17:15:13.779333+00:00

Distribution of Federated SPHN clinical routine dataset (2025.1)
type: Distribution
type: Resource
access rights: accessRights
format: RDF N QUADS
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: application/nquads
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:23.231569+00:00
metadata modified: 2026-03-03T17:15:27.707216+00:00

Code Frequency associated with the distribution
type: CodeFrequency
access rights: accessRights
language: en
license: https://creativecommons.org/licenses/by/4.0
publisher: Swiss Personalized Health Network (SPHN)
class partition: Operationen an den männlichen Geschlechtsorganen (60â64)
  class: C11
  entities: 2789
  has distinct entities: 93
  has hospital: USB
  has standard: CHOP
class partition: Krankheiten des Auges und der Augenanhangsgebilde
  class: https://biomedit.ch/rdf/sphn-resource/icd-10-gm/07
  entities: 13020
  has distinct entities: 242
  has hospital: USB
  has standard: ICD-10-GM
class partition: Operationen an den Augen (08â16)
  class: C3
  entities: 12175
  has distinct entities: 283
  has hospital: USB
  has standard: CHOP
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SPHN Federated Clinical Routine Data
type: Resource
type: Catalog
applicable legislation: Cantonal data protection laws
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
abstract: The SPHN Federated Clinical Routine Dataset consists of standardized and semantically encoded clinical data available in the SPHN format at participating hospitals. Currently, it includes data from six Swiss hospitals. The dataset covers all patients with a clinical case since 2018 who have signed the general consent. Each hospital retains its data locally and publishes corresponding metadata in the SPHN Metadata Catalog for discoverability. For research projects, subsets of this dataset can be requested through the respective hospital-specific governance processes.
access rights: accessRights
conforms to: SPHN RDF Schema 2025.1
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:14:43.938113+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:14:43.938113+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: Healthcare Information System
source: Clinical Data Platform
temporal: PeriodOfTime
  end date: 2025-10-30
  start date: 2018-01-01
keyword: SPHN-Federated-Clinical-Routine-Data-catalog
keyword: DEAS-2025.1
keyword: DEAS-catalog
keyword: SPHN-Federated-Clinical-Routine-Data-2025.1
theme taxonomy: HEAL
theme taxonomy: NCIT C165830
version: 1.0
has acronym: SPHN FedData
has age range: 0 - 115
has data provider: Universitats-Kinderspital Zurich
has data provider: Universitatsspital Basel
has data provider: Centre hospitalier universitaire vaudois
has data provider: Hopitaux universitaires de Geneve
has data provider: Universitatsspital Zurich
has data provider: Inselspital - Universitatsspital Bern
has data type: Clinical Routine
has data use restriction: See reuse conditions of the hospitals
has funding organization: Swiss Personalized Health Network
has inclusion criteria: Data available in the Clinical Data Platform of all patients with administrative cases since 2018 and general consent is accepted.
has number of patients: 817856
has principal investigator: Matthias Baumgartner
has project partner: Inselspital - Universitatsspital Bern
has project partner: Hopitaux universitaires de Geneve
has project partner: Centre hospitalier universitaire vaudois
has project partner: SIB Swiss Institute of Bioinformatics
has project partner: Swiss Academy of Medical Sciences
has project partner: Universitatsspital Zurich
has project partner: Universitatsspital Basel
has project partner: Universitats-Kinderspital Zurich
has publication: v1
has ratio of sexes: 0.95
has study type: Retrospective observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:14:43.938113+00:00
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Paediatric primary care dataset
type: Dataset
type: Resource
hdab: PREPP consortium
health category: electronic health data from EHRs
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
max typical age: 19
min typical age: 0
number of records: 45726
number of unique individuals: 45726
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2024.2
description: Dataset including routinely reported and documented primary care data from children a three Swiss paeditric practices
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0/
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: HealthcareInformationSystem
temporal: PeriodOfTime
  end date: 2023-12-31
  start date: 2017-01-01
theme: Personalized Medicine
theme: HEAL
version: 1.0
has age range: 0 - 19
has consent type: General consent
has data provider: Youkidoc Kindergesundheit
has data provider: Centre Medicale Qorpus Hirslanden
has data provider: Kinder und Jugendmedizin Koniz
has data type: Primary Care Data
has data type: Clinical Routine
has data use restriction: Access is regulated by the PREPP consortium and upon approval by its Executive Board. Contact point: jan.bonhoeffer@ukbb.ch
has inclusion criteria: Patients from the children's hospitals in Basel, Bern, Geneva
has number of patients: 45726
has ratio of sexes: 1.22
has short title: Paediatric primary care dataset
has study type: Retrospective cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:18.133411+00:00
metadata modified: 2026-03-03T17:17:19.067264+00:00

Distribution of Manually collected clinical data and questionnaire data for SPAC participants
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Distribution of Analysis of low value care indicators
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fn: Paolo Paioni

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SwissPedHealth Nested Project 1: Anthropometric routine data in Switzerland (SwissPedGrowth)
type: Dataset
type: Resource
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
health category: data on factors impacting on health, including socioeconomic, environmental and behavioural determinants of health
health category: human genetic, epigenomic and genomic data
health category: electronic health data from EHRs
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: OHMD
max typical age: 20
min typical age: 0
number of records: 97655
number of unique individuals: 97655
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2024.2
conforms to: SPH RDF Schema 2024.1
description: The SwissPedGrowth dataset is a comprehensive collection of routinely gathered pediatric clinical data from participating Swiss children's hospitals. It includes anthropometric measurements (height, weight, head circumference), clinical parameters, and laboratory values obtained from both inpatient and outpatient visits. Data are collected from January 2017 to December 2025 and are enriched with socioeconomic information (Swiss-SEP) via linkages with federal datasets (Swiss National Cohort, FSO). This pseudonymized datasetâexcluding patients who rejected general consentâaims to use multi-institutional pediatric EHR data from Switzerland (SwissPedHealth) and compare them internationally to assess the feasibility of retrieving anthropometric data from EHRs in Switzerland, investigate data quality and validity, and answer simple research questions.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: SwissPedHealth Data Repository (NDS SPH Registry)
temporal: PeriodOfTime
  end date: 2025-12-31
  start date: 2017-01-01
theme: HEAL
theme: Clinical Data
version: 1.0
has age range: 0 - 20 years
has consent type: General consent
has data provider: Universitats-Kinderspital beider Basel
has data provider: Inselspital - Universitatsspital Bern
has data provider: Hopitaux universitaires de Geneve
has data provider: NDS SPH Registry
has data provider: Centre hospitalier universitaire vaudois
has data type: Clinical routine data
has data use restriction: Access to the NDS data is regulated through the SwissPedHealth infrastructure consortium agreement V2.0 18.11.2022. As brief explanation: When planning to carry out a project using data from the SwissPedHealth NDS, you will need to set up a data project consortium agreement (DPCA) involving all participating partners. Note that this should include "internal" SwissPedHealth partners and "external" partners, i.e. those not part of the SwissPedHealth NDS Infrastructure Consortium. For the DPCA, projects should consider the SwissPedHealth general terms and conditions (GTCs) and, wherever possible, try to adopt them without or with minor deviations. This will facilitate the process of legal review and signing for all "internal" partners, since the GTCs will have already been reviewed as part of the development and adoption process. If deviations are required, these will need to be specified in the DPCA, and should be highlighted during the legal review of the DPCA. Note that the following additional documentation will be required to complete the DPCA: Project funding application/Proof of funding, Study protocol and Ethical approval. In case the latter is not available it should be added as soon as available, and the DPCA cannot be executed without evidence of ethical review and approval. All parts highlighted in yellow in the DPCA template need to be completed/amended. All DPCAs will need to incorporate a data transfer and use agreement (DTUA) and data transfer and processing agreement (DTPA). These are included in the SwissPedHealth DPCA template, reflecting SPHN requirements. Please note that adaptations may be necessary in cases where the Data Processors are not one of the BioMedIT nodes (SENSA - Lausanne, SciCORE - Basel, SIS - Zurich). For the DTUA section, each project will need to describe and depict the planned data flow as well as data and metadata to be transferred. All parts highlighted in yellow in the DTUA and DTPA templates need to be completed/amended. Acc…
has exclusion criteria: Patients treated after 28.02.2023: if general consent was not signed.
has exclusion criteria: Patients treated between 01.01.2017-28.02.2023: if active general consent refusal was given, thus those informed are included
has inclusion criteria: All children and adolescents (<20 years) who visited participating SwissPedHealth clinics (both inpatient and outpatient) during the study period
has number of patients: 97655
has publication: s.3834
has ratio of sexes: 1.17
has short title: NP1 Dataset
has study type: Observational, retrospective cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:49.262397+00:00
metadata modified: 2026-03-03T17:15:51.396141+00:00

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Distribution of ADONIS Cohort: High-Resolution Clinical Data for Neonatal Sepsis Detection
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issued: 2026-02-24T14:27:40
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ICD-O-3

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-81c04df3-4f59-4fd9-a4be-0daedfe512af
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SwissPedHealth (2024.1)

Swiss Personalized Oncology National Data Stream (SPO-NDS)
type: Catalog
type: Resource
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: HRO - Human Research Ordinance
abstract: The goal of the Swiss Personalized Oncology (SPO)-NDS is to build and extend the existing infrastructure, datasets, and know-how developed over the first 3 years of the Swiss Personalized Oncology SPHN Driver project. The SPO-NDS will aim to consolidate the clinical data acquisition, finalizing the extraction of the core data set at the 5 University Hospitals and at the Swiss Group for Clinical Cancer Research (SAKK), and pursuing the natural language processing applications to enrich the data set. In addition, high value cohorts have been and will be assembled in cancer types treated with immuno-oncology (IO) therapies that will allow comparative immunomics between highly IO sensitive tumors (e.g., melanoma, lung-cancer, triple-negative breast cancer (TNBC)) to less sensitive (e.g., MSI-CRC, hormone receptor-positive breast cancer). Using the momentum of the Tumor Profiler (TuPro) initiative, single-cell and -omics data will now be at the center of the program including NGS, IMC, digital pathology, as well as functional drug screening to drive therapeutic decisions within the existing molecular tumor boards.
access rights: accessRights
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conforms to: SPO RDF Schema 2025.1
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:16:28.616341+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:16:28.616341+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: Clinical Registry
source: HealthcareInformationSystem
temporal: PeriodOfTime
  end date: 2025-12-31
  start date: 2010-01-01
keyword: SPO-NDS-2024.1
keyword: SPO-NDS-catalog
keyword: SPO-NDS-2025.1
theme taxonomy: Personalized Medicine
theme taxonomy: Immunooncology
theme taxonomy: NCIT C20187
theme taxonomy: HEAL
theme taxonomy: Oncology
version: 1.0
has acronym: SPO-NDS
has age range: >= 18 years
has consent type: General Consent (Retrospective cohort)
has consent type: Informed Consent (Prospective cohort)
has data provider: Inselspital - Universitatsspital Bern
has data provider: Hopitaux universitaires de Geneve
has data provider: Centre hospitalier universitaire vaudois
has data provider: Universitatsspital Zurich
has data provider: Universitatsspital Basel
has data type: Translational Research
has data type: Clinical Routine
has data use restriction: Currently restricted to the use within the consortium. Anyone considering reuse of data from the SPO-NDS project must comply with the SPO-NDS CA, in particular sections 6.1, 6.2. 6.4, 6.5 and 6.6.
has exclusion criteria: Melanoma-specific criteria: Uveal melanoma (ICD-10 C69)
has exclusion criteria: Overall criteria: patients treated for multiple cancers
has funding organization: Personalized Health and Related Technologies
has funding organization: Swiss Personalized Health Network
has inclusion criteria: Melanoma-specific criteria: ICD-10 code C43 or diagnosis text contains 'melanoma|melanom|melanome', treated with anti-PD-1 based or anti-PDL-1 based therapies
has inclusion criteria: Overall criteria: age at first date (incidence datetime) of diagnosis older than 18 years, approval of general consent, treated within the UH, biopsy assessed by NGS, date of NGS on or after 1st of January 2015
has number of patients: 431
has principal investigator: Bernd Bodenmiller
has principal investigator: Olivier Michielin
has project partner: ETH Zurich
has project partner: University of Lausanne
has project partner: EPFL - Swiss Federal Technology Institute of Lausanne
has project partner: University of Bern
has project partner: Swiss Group for Clinical Cancer Research
has project partner: HES-SO University of Applied Sciences and Arts Western Switzerland
has project partner: University of Geneva
has project partner: Kantonsspital Baselland
has project partner: University of Basel
has project partner: University of Zurich
has study type: Retrospective cohort study and prospective cohort study
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Distribution of Drug Plasma Level Data and associated Clinical Data of Gentamicin, Vancomycin, Voriconazole
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Personalized, data-driven prediction and assessment of Infection related outcomes in Swiss ICUs (IICU)
type: Resource
type: Catalog
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: HRO - Human Research Ordinance
abstract: Infections show a range of diverse phenotypes with variable impact on clinical course and outcomes. Our NDS proposal focuses on this heterogeneity within critically ill patients with severe infections using a combined clinical- and data-driven approach for an improved personalized assessment, characterization and outcome prediction on patients with infections. We will integrate rich and diverse data sources to predict outcomes relevant in the lighthouse project and nested projects
access rights: accessRights
conforms to: IICU RDF Schema 2025.1
conforms to: SPHN RDF Schema 2025.1
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:15:33.481959+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:15:33.481959+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: Case Report Form
source: HealthcareInformationSystem
source: Omics Facility
temporal: PeriodOfTime
  end date: 2025-12-31
  start date: 2019-08-01
keyword: IICU-catalog
keyword: IICU-2025.1
theme taxonomy: HEAL
theme taxonomy: Sepsis (disorder)
theme taxonomy: NCIT C53511
theme taxonomy: Electronic Case Report Form
theme taxonomy: NCIT C16003
theme taxonomy: NCIT C44272
version: 1.0
has acronym: IICU
has age range: >= 18 years
has consent type: General consent
has data provider: Universitatsspital Zurich
has data provider: Inselspital - Universitatsspital Bern
has data provider: Swiss Pathogen Surveillance Platform
has data provider: Centre hospitalier universitaire vaudois
has data provider: Hopitaux universitaires de Geneve
has data provider: Universitatsspital Basel
has data type: Pathogen Information
has data type: Clinical Routine
has data type: eCRF
has data use restriction: Use of the dataset is currently restricted to member institutions of the project consortium.
has exclusion criteria: Non-ICU patients, patients under 18 years of age, or patients who have declined consent for data use
has funding organization: Swiss Personalized Health Network
has funding organization: Personalized Health and Related Technologies
has inclusion criteria: ICU patients aged 18 and older who have provided general consent (GC) or whose consent status for data use is unknown
has principal investigator: Catherine Jutzeler
has principal investigator: Adrian Egli
has project partner: Swiss Pathogen Surveillance Platform
has project partner: ETH Zurich
has project partner: Universitatsspital Basel
has project partner: Inselspital - Universitatsspital Bern
has project partner: Centre hospitalier universitaire vaudois
has project partner: Universitatsspital Zurich
has project partner: Hopitaux universitaires de Geneve
has study type: Retrospective cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:33.481959+00:00
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Pediatric Personalized Research Network Switzerland (SwissPedHealth) - a Joint Pediatric National Data Stream
type: Catalog
type: Resource
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: HRO - Human Research Ordinance
abstract: Due to the unique epidemiology, developmental changes, and high vulnerability of children, there is an urgent need to continuously improve health care based on real world pediatric data. The digital transformation is a unique opportunity to shape a data-driven, agile, learning health care system and deliver more efficient and personalized care to children and their families. The goal of SwissPedHealth is to build a sustainable and scalable infrastructure to make routine clinical data from pediatric hospitals in Switzerland interoperable, standardized, quality-controlled, and ready for observational research, quality assurance, trials, and health-policy creation. SwissPedHealth is one of four National Data Streams co-funded by the Swiss Personalized Health Network (SPHN) and the ETH focus area Personalized Health Related Technologies (PHRT). SwissPedHealth develops modular governance and regulatory strategies in collaboration with clinical data warehouses, the Data Coordination Center, Biomedical Information Technology Network, and others. The data stream contains work packages focusing on: 1) governance and implementation of standardized data collection, 2) nested projects to test the feasibility of the data stream, 3) a lighthouse project that enriches the data stream by integrating multi-omics data, aiming to improve diagnoses of rare diseases, and 4) engagement with families through patient and public involvement activities and interviews.
access rights: accessRights
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conforms to: SPH RDF Schema 2024.1
is part of: SPHN FAIR Data Point
issued: 2026-03-03T17:15:41.834367+00:00
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-03-03T17:15:41.834367+00:00
publisher: Swiss Personalized Health Network (SPHN)
source: ClinicalDataPlatform
source: Clinical Registry
source: Research Laboratory
temporal: PeriodOfTime
  comment: for the Nested Projects, exception NP4 administered in-patients between 2021-2022 only
  end date: 2025-12-31
  start date: 2017-01-01
temporal: PeriodOfTime
  comment: for patients recruited through the Lighthouse Project (Prospective cohort, Phase 3)
  end date: 2025-12-31
  start date: 2022-09-01
keyword: SwissPedHealth-2025.1
keyword: SwissPedHealth-2024.1
keyword: SPH-SwissPedHealth-catalog
keyword: SwissPedHealth-catalog
keyword: SPH-SwissPedHealth-2024.1
keyword: SPH-SwissPedHealth-2025.1
theme taxonomy: HEAL
theme taxonomy: Clinical Data
theme taxonomy: Personalized Medicine
version: 1.0
has acronym: SwissPedHealth
has age range: 0 - 20 years (at admission)
has consent type: informed consent for patients recruited through the Lighthouse Project (Prospective cohort, Phase 3)
has consent type: General consent
has data provider: Luzerner Kantonsspital
has data provider: Universitats-Kinderspital beider Basel
has data provider: Ostschweizer Kantonspital
has data provider: Inselspital - Universitatsspital Bern
has data provider: Hopitaux universitaires de Geneve
has data provider: Centre hospitalier universitaire vaudois
has data provider: Universitats-Kinderspital Zurich
has data type: Physiological Tests
has data type: Clinical Routine
has data type: Socioeconomic Characteristics
has data use restriction: Access to the NDS data is regulated through the SwissPedHealth infrastructure consortium agreement V2.0 18.11.2022. As brief explanation: When planning to carry out a project using data from the SwissPedHealth NDS, you will need to set up a data project consortium agreement (DPCA) involving all participating partners. Note that this should include "internal" SwissPedHealth partners and "external" partners, i.e. those not part of the SwissPedHealth NDS Infrastructure Consortium. For the DPCA, projects should consider the SwissPedHealth general terms and conditions (GTCs) and, wherever possible, try to adopt them without or with minor deviations. This will facilitate the process of legal review and signing for all "internal" partners, since the GTCs will have already been reviewed as part of the development and adoption process. If deviations are required, these will need to be specified in the DPCA, and should be highlighted during the legal review of the DPCA. Note that the following additional documentation will be required to complete the DPCA: Project funding application/Proof of funding, Study protocol and Ethical approval. In case the latter is not available it should be added as soon as available, and the DPCA cannot be executed without evidence of ethical review and approval. All parts highlighted in yellow in the DPCA template need to be completed/amended. All DPCAs will need to incorporate a data transfer and use agreement (DTUA) and data transfer and processing agreement (DTPA). These are included in the SwissPedHealth DPCA template, reflecting SPHN requirements. Please note that adaptations may be necessary in cases where the Data Processors are not one of the BioMedIT nodes (SENSA - Lausanne, SciCORE - Basel, SIS - Zurich). For the DTUA section, each project will need to describe and depict the planned data flow as well as data and metadata to be transferred. All parts highlighted in yellow in the DTUA and DTPA templates need to be completed/amended. Acc…
has funding organization: Personalized Health and Related Technologies
has funding organization: Swiss Personalized Health Network
has inclusion criteria: Male and female
has inclusion criteria: All pediatric divisions
has inclusion criteria: Age < 20 years at admission
has inclusion criteria: In and outpatients
has inclusion criteria: Patients attended in pediatric hospitals
has number of patients: 319095
has principal investigator: Julia Vogt
has principal investigator: Luregn Schlapbach
has project partner: Inselspital - Universitatsspital Bern
has project partner: University of Bern
has project partner: Hopitaux universitaires de Geneve
has project partner: EPFL - Swiss Federal Technology Institute of Lausanne
has project partner: University of Basel
has project partner: University of Zurich
has project partner: Centre hospitalier universitaire vaudois
has project partner: Universitats-Kinderspital Zurich
has project partner: Luzerner Kantonsspital
has project partner: Universitats-Kinderspital beider Basel
has project partner: ETH Zurich
has project partner: University of Geneva
has project partner: Ostschweizer Kinderspital
has project partner: University of Lausanne
has publication: vbad142
has publication: bmjopen-2024-091884
has publication: https://doi.org/10.1101/2024.07.01.24309377
has publication: s42255-022-00720-8
has ratio of sexes: 1.16
has study type: Retrospective cohort study (Nested Projects, Lighthouse Project Phase 2)
has study type: Prospective, observational study (Lighthouse Project Phase 3)
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:41.834367+00:00
metadata modified: 2026-03-03T17:15:43.731650+00:00

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-5d8d4fd7-f222-4c5b-89f5-1bb39428a245
type: Individual
fn: Michael Koller

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

CHUV Clinical Routine Dataset SPHN (2025.1)
type: Resource
type: Dataset
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
has coding system: UCUM
has coding system: CHOP
has coding system: LOINC
has coding system: www.uid.admin.ch
has coding system: SNOMED CT
has coding system: GTIN
has coding system: https://www.bfs.admin.ch/news/de/2024-0148
hdab: Centre hospitalier universitaire vaudois
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: electronic health data from EHRs
max typical age: 109
min typical age: 0
number of records: 102116
number of unique individuals: 102116
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2025.1
description: This dataset describes the data, which is available in SPHN format for CHUV.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Healthcare Information System
source: Clinical Data Platform
temporal: PeriodOfTime
  end date: 2025-08-01
  start date: 2018-01-01
keyword: SPHN-Federated-Clinical-Routine-Data-2025.1-CHUV-dataset
keyword: DEAS-2025.1-CHUV-dataset
theme: NCIT C165830
theme: HEAL
version: 1.0
has age range: 0 - 109
has consent type: General Consent
has data provider: Centre hospitalier universitaire vaudois
has data type: Clinical Routine
has data use restriction: Access is given by internal validation pursuant to institutional guidelines and processes and approval by the Data Access Body.
has inclusion criteria: Data available in the Clinical Data Platform of all patients with administrative cases since 2018 and general consent is accepted.
has number of patients: 102116
has ratio of sexes: 0.95
has short title: Clinical Routine Dataset
has study type: Retrospective observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:14:44.690314+00:00
metadata modified: 2026-03-03T17:14:49.850921+00:00

accessRights
type: RightsStatement
description: RESTRICTED

Manually collected clinical data and questionnaire data for SPAC participants
type: Resource
type: Dataset
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
applicable legislation: HRO - Human Research Ordinance
has coding system: SNOMED CT
has coding system: https://www.bfs.admin.ch/news/de/2024-0148
has coding system: UCUM
has coding system: LOINC
hdab: SPAC consortium
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: data from research cohorts, questionnaires and surveys related to health, after the first publication of the related results
health category: electronic health data from EHRs
max typical age: 18
min typical age: 0
number of records: 2018
number of unique individuals: 2018
access rights: RESTRICTED
description: This dataset contains clinical data collected at baseline and during follow-up visits for SPAC participants enrolled through Insel Gruppe AG, University of Bern Children's Hospital, University Children's Hospital Zurich - Eleonore Foundation and Luzerner Kantonspital . The data was manually extracted from the hospital electronic health record and entered into the study database. In addition to clinical information, the dataset includes selected baseline characteristics and variables related to self-reported emergency department visits and hospitalizations due to respiratory issues, which was reported in questionnaires answered by the participants.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Cohort
temporal: PeriodOfTime
  end date: 2023-12-31
  start date: 2017-01-01
theme: clinical data
theme: Personalized Medicine
theme: HEAL
version: 1.0
has age range: 0 - 18 years
has consent type: Informed Consent
has data provider: Institute of Social and Preventive Medicine, University of Bern
has data type: Longitudinal
has data type: Clinical Routine
has data type: PROMs
has data use restriction: Reuse of data of SPHN-SPAC is described in the SPHN-SPAC Data Project Consortium Agreement. Briefly, data may be shared under the prerequisites listed in the SwissPedHealth General Terms and Conditions (GTC), if they meet the following conditions: 1. the Project Executive Board must approve the sharing the data, 2. If the data includes personal information, each person or group that provided the data must give their individual, written consent, 3. Only parties or third parties who have signed an agreement with all project members (and approved by the Project Executive Board) can access the data.4. The sharing of data must follow all relevant laws, particularly those about human research and data usage, 5. The data cannot be used for profit or commercial purposes, 6. If required by law, the sharing must have approval from ethical committees or other relevant authorities. Contact point: claudia.kuehni@unibe.ch.
has inclusion criteria: Enrolled in SPAC study during the above period through the pneumology clinics at Insel Gruppe AG, University of Bern Children's Hospital, University Children's Hospital Zurich - Eleonore Foundation and Luzerner Kantonspital
has number of patients: 2018
has publication: https://doi.org/10.1183/23120541.00050-2018
has publication: ppul.27499
has ratio of sexes: 1.53 (males 1220, females 798)
has short title: SPAC Dataset
has study type: Observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:18:02.703873+00:00
metadata modified: 2026-03-03T17:18:03.876660+00:00

Clinical gait analysis data for cerebral palsy and toe walking patients
type: Dataset
type: Resource
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
hdab: Agent
health category: electronic health data from EHRs
health category: other health data from medical devices
max typical age: 80
min typical age: 6
number of records: 3607
number of unique individuals: 3607
access rights: RESTRICTED
description: The dataset contains clinical gait analysis data for two populations, cerebral palsy and toe walking patients, that were collected at two different centers, the clinical gait analysis services at UKBB and HUG. The dataset contains physical examination data (anthropometric measurements, range of motion measurements, muscle strength assessments and spasticity assessments), surgical procedure data, and instrumented gait analysis data (spatio-temporal parameters, gait scores, kinematics, kinetics and electromyography data), as well as SOP for both centers.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Cohort
temporal: PeriodOfTime
  end date: 2024-12-31
  start date: 1993-01-01
theme: NCIT C189005
theme: NCIT C154626
theme: NCIT C75445
theme: HEAL
version: 1.0
has age range: 0.6 - 80
has consent type: General Consent
has data provider: Hopitaux universitaires de Geneve
has data provider: Universitats-Kinderspital beider Basel
has data type: Clinical Routine
has data type: Gait Analysis
has data use restriction: The data can be accessed and used by the persons authorized to access the BioMedIT space of the EVIGAITCP project. Other interested parties may contact the project leader (morgan.sangeux@ukbb.ch) to discuss reuse conditions.
has exclusion criteria: A documented refusal from the patient or the legal representative(s) is the main exclusion criteria. In addition, cases with missing or inaccurate data will be excluded.
has inclusion criteria: The project will include all data available from UKBB and HUG, with the following inclusion criteria: male or female, children and adults with a neuromuscular disorder, including cerebral palsy and toe walking. It is important to include the maximum time span for both centres in order to maximise our capacity to assemble treatment and control groups from unicentric and multicentric datasets whenever possible. By control group, we mean the group of patients who did not undergo any treatment between two gait data acquisitions.
has number of patients: 3607
has ratio of sexes: 1.46
has study type: Retrospective cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:18:09.481640+00:00
metadata modified: 2026-03-03T17:18:10.579669+00:00

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-d2ab68d2-7308-4d1c-ade8-87a82ccf01c5
type: Individual
fn: Claudia Kuehni

accessRights
type: RightsStatement
description: RESTRICTED

VOID Dataset associated with the Distribution
type: Dataset
access rights: accessRights
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
triples: 2464829758
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:22.077566+00:00
metadata modified: 2026-03-03T17:16:22.077566+00:00

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-9049f870-cbec-453c-841a-fd196ab0f3fe
type: Individual
fn: Adrian Egli

USZ Clinical Routine Dataset (2025.1)
type: Dataset
type: Resource
applicable legislation: Cantonal data protection laws
applicable legislation: HRO - Human Research Ordinance
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
has coding system: GTIN
has coding system: https://www.bfs.admin.ch/news/de/2024-0148
has coding system: ATC
has coding system: CHOP
has coding system: LOINC
has coding system: www.uid.admin.ch
has coding system: SNOMED CT
has coding system: NANDA
has coding system: UCUM
hdab: University Hospital Zurich, Data Governance Board
health category: electronic health data from EHRs
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
max typical age: 107
min typical age: 1
number of records: 120863
number of unique individuals: 120863
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2025.1
description: This dataset describes the data, which is available in SPHN format for USZ.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Clinical Data Platform
source: Healthcare Information System
temporal: PeriodOfTime
  end date: 2025-09-30
  start date: 2012-01-01
keyword: DEAS-2025.1-USZ-dataset
keyword: SPHN-Federated-Clinical-Routine-Data-2025.1-USZ-dataset
theme: HEAL
theme: NCIT C165830
version: 1.0
has age range: 1 - 107
has consent type: General Consent
has data provider: Universitatsspital Zurich
has data type: Clinical Routine
has data use restriction: Access is given by internal validation pursuant to institutional guidelines and processes and approval by the Data Access Body.
has inclusion criteria: Data available in the Clinical Data Platform of all patients with administrative cases since 2012 and general consent is accepted.
has number of patients: 120863
has ratio of sexes: 0.96
has short title: Clinical Routine Dataset
has study type: Retrospective observational study
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:15.004845+00:00
metadata modified: 2026-03-03T17:15:21.311957+00:00

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access rights: accessRights
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license: https://creativecommons.org/licenses/by/4.0
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class partition: Operationen an den Ohren (18â20)
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class partition: Clinical finding (finding)
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:07.961897+00:00
metadata modified: 2026-03-03T17:15:07.961897+00:00

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

Paediatric clinical hospital dataset
type: Resource
type: Dataset
hdab: PREPP consortium
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: electronic health data from EHRs
max typical age: 19
min typical age: 0
number of records: 22783
number of unique individuals: 22783
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2024.2
description: Dataset including routinely reported and documented hospital data from children in three Swiss hopsitals
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0/
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: HealthcareInformationSystem
temporal: PeriodOfTime
  end date: 2023-12-31
  start date: 2017-01-01
keyword: PREPP-2024.1-Paediatric-clinical-hospital-and-primary-care-data
keyword: PREPP-2024.1-dataset-01
theme: HEAL
theme: Personalized Medicine
version: 1.0
has age range: 0 - 19
has consent type: General consent
has data provider: Inselspital - Universitatsspital Bern
has data provider: Universitats-Kinderspital beider Basel
has data provider: Hopitaux universitaires de Geneve
has data type: Primary Care Data
has data type: Clinical Routine
has data use restriction: Access is regulated by the PREPP consortium and upon approval by its Executive Board. Contact point: jan.bonhoeffer@ukbb.ch
has inclusion criteria: All patients from the children's hospitals in Basel, Bern, Geneva
has number of patients: 22783
has ratio of sexes: 1.22
has short title: Paediatric clinical hospital dataset
has study type: Retrospective cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:19.972134+00:00
metadata modified: 2026-03-03T17:17:24.040683+00:00

SPO-NDS 2024.1

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type: ConceptAvailability
access rights: accessRights
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
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accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

Distribution of Personalized, data-driven prediction and assessment of Infection related outcomes in Swiss ICUs
type: Distribution
type: Resource
access rights: accessRights
format: RDF TRIG
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
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metadata identifier: identifier
metadata issued: 2026-03-03T17:15:36.426677+00:00
metadata modified: 2026-03-03T17:15:36.426677+00:00

accessRights
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description: RESTRICTED

accessRights
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description: RESTRICTED

Distribution of USB clinical routine dataset (2025.1)
type: Distribution
type: Resource
access rights: accessRights
format: RDF TRIG
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
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metadata identifier: identifier
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Catalogs
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has member relation: metadataCatalog
membership resource: SPHN FAIR Data Point

Phenotypic Observation Remethylation Disorder (Phase 2)
type: Resource
type: Dataset
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: HRO - Human Research Ordinance
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: OHMD
health category: electronic health data from EHRs
health category: data on factors impacting on health, including socioeconomic, environmental and behavioural determinants of health
health category: human genetic, epigenomic and genomic data
number of records: 98
number of unique individuals: 98
access rights: RESTRICTED
conforms to: SPH RDF Schema 2024.1
description: The dataset consists of phenotypes extracted from free-text clinical reports collected over 30 years, where individuals were referred to with suspicion of a remethylation disorder (RD). All individuals presented with elevated plasma homocysteine levels. Phenotype annotations were extracted using a semi-automated pipeline and reviewed by at least two annotators in consultation with medical experts. The dataset is structured in RDF format and serves as a benchmark for the newly developed SPH Concept 'Phenotypic Observation'
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: Research Laboratory
theme: NCIT C205365
theme: HEAL
theme: Clinical Data
theme: Personalized Medicine
theme: Phenotypic abnormality
version: 1.0
has consent type: Consent for reuse of samples must be available
has data provider: Universitats-Kinderspital Zurich
has data type: Phenotypic
has data use restriction: Samples and data of children with extreme phenotypes in Phase 2 arise from existing cohorts where consent to perform omics in stored biospecimens are already available. Conditions for data reuse must be determined with the cohort's responsible PI (not within SwissPedHealth)
has exclusion criteria: Samples excluded for which a documented refusal of further use is available
has inclusion criteria: Phase 2 metabolic cohort: Elevated homocysteine in Plasma, Phenotypic Observation connected to the patient
has number of patients: 98
has ratio of sexes: 3:2
has short title: Phase 2 RDF Dataset
has study type: Retrospective study from existing cohort (Phase 2)
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:57.258723+00:00
metadata modified: 2026-03-03T17:15:58.857910+00:00

Distribution of MOMIC RDF Dataset (Phase 3)
type: Distribution
type: Resource
access rights: accessRights
format: RDF TURTLE
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/turtle
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:04.858547+00:00
metadata modified: 2026-03-03T17:16:07.232757+00:00

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-6c793a98-3755-4e5f-8978-da1282e452e6
type: Individual
fn: Prof. Luregn Schlapbach

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-245ce653-be73-4d11-ad7d-456064e75b83
type: Individual
fn: Swiss Personalized Health Network (SPHN)

Drug Plasma Level Data and associated Clinical Data of Gentamicin, Vancomycin, Voriconazole
type: Resource
type: Dataset
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: Cantonal data protection laws
applicable legislation: HRO - Human Research Ordinance
has coding system: SNOMED CT
has coding system: LOINC
has coding system: UCUM
has coding system: https://www.bfs.admin.ch/news/de/2024-0148
has coding system: CHOP
hdab: SwissPedDW Data Access and Re-Use Committee
health category: electronic health data from EHRs
health category: healthcare-related administrative data, including on dispensations, reimbursement claims and reimbursements
health category: human genetic, epigenomic and genomic data
health category: OHMD
max typical age: 18
min typical age: 0
number of records: 1357
number of unique individuals: 1357
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2024.2
description: The dataset contains drug plasma level data of gentamicin, fludarabine and vancomycin and complementary clinical data. These data will be used in pharmacokinetic models to better understand the pharmacokinetics of these drugs and therefore be able to optimise the dosage regimens for children.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: ClinicalDataPlatform
source: HealthcareInformationSystem
temporal: PeriodOfTime
  end date: 2025-03-31
  start date: 2014-04-01
keyword: SwissPedDW-2024.1-dataset-01
keyword: SwissPedDW-2024.1-Main-project
theme: Pharmacokinetics
theme: Personalized Medicine
theme: Pediatric
theme: HEAL
version: 1.0
has age range: 0 - 18
has consent type: General Consent
has data provider: Universitats-Kinderspital beider Basel
has data provider: Hopitaux universitaires de Geneve
has data provider: Universitats-Kinderspital Zurich
has data provider: Centre hospitalier universitaire vaudois
has data type: Clinical Routine
has data use restriction: Access to the SwissPedDW Demonstrator project data is regulated by the SwissPedDW governance bodies. Approval is given by the SwissPedDW Reuse and Access Committee. Contact: paolo.paioni@kispi.uzh.ch.
has exclusion criteria: Cystic fibrosis (for Gentamicin only)
has exclusion criteria: Renal replacement therapy (Haemodialysis, -filtration, Peritoneal dialysis)
has inclusion criteria: Inpatient
has inclusion criteria: Signed general consent
has inclusion criteria: Routinely measured drug levels (TDM: Therapeutic Drug Monitoring) for one of the three drugs requested for the main project
has number of patients: 1357
has publication: psp4.12723
has publication: pharmaceutics13101596
has publication: pharmaceutics16010013
has ratio of sexes: 799/558 (m/f) = 1.43
has short title: Main dataset
has study type: Data registry
metadata identifier: identifier
metadata issued: 2026-03-03T17:16:40.107835+00:00
metadata modified: 2026-03-03T17:16:44.774383+00:00

Distribution of Cohort Demonstrator USB dataset (2012-2024)
type: Distribution
type: Resource
access rights: accessRights
format: JSON
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/plain
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:47.086622+00:00
metadata modified: 2026-03-03T17:17:47.086622+00:00

accessRights
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description: RESTRICTED

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-d74ce7f4-9f52-4e93-8891-f7abd15cd2c8
type: Individual
fn: Olivier Michielin

FAIR Data Point Profile

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-a07a466e-927c-4d3a-9ef3-fcbf8702975a
type: Individual
fn: Sabine Blum

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issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
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metadata issued: 2026-03-03T17:17:23.634653+00:00
metadata modified: 2026-03-03T17:17:23.634653+00:00

SPHN FAIR Data Point
type: FAIRDataPoint
type: Resource
type: DataService
type: MetadataService
access rights: accessRights
description: The SPHN Metadata Catalog provides an overview of health research datasets available in Switzerland. It describes standardized metadata of each dataset, including the scope of the data, creation date, and access conditions. While the underlying data come from diverse sources and domains, the metadata comply with the HealthDCAT-AP (https://healthdataeu.pages.code.europa.eu/healthdcat-ap/releases/release-6) standard of the European Health Data Space (EHDS). To make your data findable in the catalog, write an email to: fair-data-team@sib.swiss
language: en
license: https://creativecommons.org/licenses/by/4.0
publisher: Swiss Personalized Health Network (SPHN)
version: 1.0
fdp software version: FDP:sphn-dev~6e18647
metadata identifier: identifier
metadata issued: 2026-03-03T17:14:04.078167+00:00
metadata modified: 2026-03-03T17:18:39.411800+00:00

PREPP 2024.1

https://biomedit.ch/rdf/sphn-resource/sphn-metacat-bb067428-8bba-4605-975c-540f3c926d66
type: Individual
fn: Adrian Egli

VOID Dataset associated with the Distribution
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access rights: accessRights
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language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
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metadata issued: 2026-03-03T17:17:22.337985+00:00
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Cohort Demonstrator CHUV dataset (2007-2025)
type: Resource
type: Dataset
applicable legislation: HRA - Human Research Act
applicable legislation: FADP - Federal Act on Data Protection
applicable legislation: de
applicable legislation: Cantonal data protection laws
applicable legislation: HRO - Human Research Ordinance
has coding system: LOINC
hdab: STCS Scientific Committee and Data Governance Board
health category: electronic health data from EHRs
max typical age: 95
min typical age: 8
number of records: 1651
number of unique individuals: 1651
access rights: RESTRICTED
conforms to: SPHN RDF Schema 2024.2
description: This dataset was obtained from a data extraction from CHUV CDWH, for STCS patients followed at CHUV. Corresponding patient records were identified using the linkage log (STCS person IDs linked with Hospital person ID) of HORUS. The RDF Schema used to extract the data re-used 23 SPHN concepts, such as 'Lab Test', which included 17 different types of laboratory tests identified by LOINC codes. Transformation into RDF using the SPHN connector and transferred to CHIL after encryption with sett. This data can be browsed and queried on CHIL by authorized researchers. By the end of the current week (06/08/2025), this data will be integrated into 3LC, the STCS research database. This data will increase the granularity of the data available for research.
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
source: ClinicalDataPlatform
temporal: PeriodOfTime
  end date: 2025-04-09
  start date: 2007-12-31
theme: Transplant Study
theme: Data integration and warehousing
theme: HEAL
theme: data integration
theme: clinical data
version: 1.0
has age range: 8 - 95
has consent type: Informed Consent
has data provider: Centre hospitalier universitaire vaudois
has data type: Clinical Routine
has data type: Longitudinal
has data use restriction: STCS data enriched with hospital CDWH data, will be available to researchers following approval of an application ('nested STCS project') by the STCS Data Center, STCS scientific committee, data governance board, and the competent ethics committee. The data provider agreed to the re-use of the CDWH data by agreeing with the DTUA/DTPA between Hospital (as the data provider), STCS (as the data recipient), and BioMedIT network (as the data processor).
has inclusion criteria: STCS patients (solid organ transplants recipients) at CHUV
has number of patients: 1651
has ratio of sexes: 1.83 Male (967 Male, 526 Female). Note: gender information is missing for 158 patients.
has study type: Observational long term cohort study
metadata identifier: identifier
metadata issued: 2026-03-03T17:17:49.119209+00:00
metadata modified: 2026-03-03T17:17:51.521423+00:00

SPO-NDS Melanoma Retrospective Cohort (2024.1)

Distribution of Phenotypic Observation Remethylation Disorder (Phase 2)
type: Distribution
type: Resource
access rights: accessRights
format: RDF TURTLE
issued: 2026-02-24T14:27:40
language: en
license: https://creativecommons.org/licenses/by/4.0
modified: 2026-02-24T14:27:40
publisher: Swiss Personalized Health Network (SPHN)
media type: text/turtle
version: 1.0
metadata identifier: identifier
metadata issued: 2026-03-03T17:15:58.580283+00:00
metadata modified: 2026-03-03T17:15:58.580283+00:00

accessRights
type: RightsStatement
description: RESTRICTED

accessRights
type: RightsStatement
description: RESTRICTED

Distribution of Cohort Demonstrator CHUV dataset (2007-2025)
type: Distribution
type: Resource
access rights: accessRights
format: CSV
issued: 2026-02-24T14:27:40
language: en
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Krankheiten des Nervensystems
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Neubildungen
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Operationen am hämatopoetischen und lymphatischen System (40â41)
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Urinalysis Panels
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Urinalysis
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Specific hemodynamics
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Operationen am respiratorischen System (30â34)
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General body height (length)
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Krankheiten des Urogenitalsystems
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Operationen an den Harnorganen (55â59)
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Krankheiten des Kreislaufsystems
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ANTIINFECTIVES FOR SYSTEMIC USE
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Operationen am Nervensystem (01â05)
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Endokrine, Ernährungs- und Stoffwechselkrankheiten
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CARDIOVASCULAR SYSTEM
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NERVOUS SYSTEM
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Psychische und Verhaltensstörungen
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Specimen (specimen)
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Geburtshilfliche Operationen (72â75)
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Specimen information
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Coagulation
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Operationen an den männlichen Geschlechtsorganen (60â64)
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Mutations
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ALIMENTARY TRACT AND METABOLISM
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Krankheiten des Atmungssystems
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Operationen an Nase, Mund und Pharynx (21â29)
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Massnahmen und Interventionen nicht anderswo klassifizierbar (00)
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ANTINEOPLASTIC AND IMMUNOMODULATING AGENTS
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Serology - non-micro
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Body structure (body structure)
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Operationen am kardiovaskulären System (35â39)
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General body weight
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Hematology and Cell counts
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Urinalysis
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Chemistry - challenge
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Faktoren, die den Gesundheitszustand beeinflussen und zur Inanspruchnahme des Gesundheitswesens führen
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Massnahmen und Interventionen nicht anderswo klassifizierbar (00)
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Krankheiten des Auges und der Augenanhangsgebilde
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Krankheiten des Blutes und der blutbildenden Organe sowie bestimmte Störungen mit Beteiligung des Immunsystems
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Microbiology Panels
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Krankheiten der Haut und der Unterhaut
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Translocations
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Bestimmte Zustände, die ihren Ursprung in der Perinatalperiode haben
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ANTIPARASITIC PRODUCTS, INSECTICIDES AND REPELLENTS
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Allergy
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Messinstrumente und Messungen (AA)
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Angeborene Fehlbildungen, Deformitäten und Chromosomenanomalien
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Serology Panels
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Cell markers
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Drug toxicology
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RESPIRATORY SYSTEM
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SYSTEMIC HORMONAL PREPARATIONS, EXCL. SEX HORMONES AND INSULINS
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Operationen am respiratorischen System (30â34)
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Schwangerschaft, Geburt und Wochenbett
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Endokrine, Ernährungs- und Stoffwechselkrankheiten
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BLOOD AND BLOOD FORMING ORGANS
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Molecular pathology
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Hematology and Cell counts
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Krankheiten des Blutes und der blutbildenden Organe sowie bestimmte Störungen mit Beteiligung des Immunsystems
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Verletzungen, Vergiftungen und bestimmte andere Folgen äuÃerer Ursachen
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ÃuÃere Ursachen von Morbidität und Mortalität
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Finnegan Neonatal Abstinence Scoring Tool (assessment scale)
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Paediatric Index of Mortality 3 (assessment scale)
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Faces Pain Scale - Revised (assessment scale)
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Functional independence measure (assessment scale)
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Charlson Comorbidity Index (assessment scale)
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Montreal Cognitive Assessment version 8.1 (assessment scale)
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Nine Equivalents of Nursing Manpower Use Score (observable entity)
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Amyotrophic Lateral Sclerosis Functional Rating Scale Revised (assessment scale)
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Voice handicap index (assessment scale)
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National Institutes of Health stroke scale (assessment scale)
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Modified checklist for autism in toddlers (assessment scale)
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Glasgow coma scale (assessment scale)
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Impact of event scale (assessment scale)
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Richmond Agitation Sedation Scale (assessment scale)
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Ãchelle de Douleur et d'Inconfort du Nouveau-né (assessment scale)
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National Early Warning Score (assessment scale)
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Revised Face, Legs, Activity, Cry, Consolability scale (assessment scale)
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Timed up and go mobility test (assessment scale)
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Beck depression inventory (assessment scale)
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Frailty Index (assessment scale)
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Medical outcomes study short form general health survey (assessment scale)
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Pain intensity rating scale (assessment scale)
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Katz activities of daily living (assessment scale)
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Health of the Nation Outcome Scale (generic version) (assessment scale)
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Barthel index (assessment scale)
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Addiction Research Foundation Clinical Institute Withdrawal Assessment for Alcohol (assessment scale)
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