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Disorders of Cornification Innsbruck
type: Resource
type: PatientRegistry
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description: PatientRegistry of Disorders of Cornification Innsbruck
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
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theme: Orphanet_281217
theme: Orphanet 461
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:45.788602+00:00
metadata modified: 2024-04-11T12:49:45.788602+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

DCLLSG registry of the German CLL Study Group - Long term observation of patients with CLL, B-PLL, T-PLL, SLL, T/ NK-LGL and Richter transformation
type: PatientRegistry
type: Resource
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description: PatientRegistry of DCLLSG registry of the German CLL Study Group - Long term observation of patients with CLL, B-PLL, T-PLL, SLL, T\/ NK-LGL and Richter transformation
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keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
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theme: Orphanet_86872
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personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:57.952137+00:00
metadata modified: 2024-04-11T12:47:57.952137+00:00

Irish Registry for homocystinurias and methylation defects - contributes to E-HOD
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Irish Registry for homocystinurias and methylation defects - contributes to E-HOD
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_289290
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theme: Orphanet 394
theme: Orphanet_88618
theme: Orphanet 2170
theme: Orphanet 2169
theme: Orphanet_289891
theme: Orphanet_369955
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:18.276642+00:00
metadata modified: 2024-04-11T12:48:18.276642+00:00

Glomerulonephritis Registry
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Glomerulonephritis Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
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  url: https://www.orpha.net/
theme: Orphanet 656
theme: Orphanet_35069
theme: Orphanet_69063
theme: Orphanet_156152
theme: Orphanet_69061
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:33.810018+00:00
metadata modified: 2024-04-11T12:49:33.810018+00:00

Catalogs
type: DirectContainer
has member relation: metadataCatalog
membership resource: The Orphanet catalogue of registries and biobanks

German epilepsy registry
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of German epilepsy registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_101998
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:58.798042+00:00
metadata modified: 2024-04-11T12:47:58.798042+00:00

MCRN078 (E2080-E044-401): European Registry of Anti-Epileptic Drug Use in Patients with Lennox-Gastaut Syndrome - UK
type: PatientRegistry
type: Resource
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description: PatientRegistry of MCRN078 (E2080-E044-401): European Registry of Anti-Epileptic Drug Use in Patients with Lennox-Gastaut Syndrome - UK
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 2382
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:03.338792+00:00
metadata modified: 2024-04-11T12:48:03.338792+00:00

accessRights
type: RightsStatement
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SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_97965
theme: Orphanet_98026
theme: Orphanet_280342
theme: Orphanet_68367
theme: Orphanet_98006
theme: Orphanet_97935
theme: Orphanet_97955
theme: Orphanet_68329
theme: Orphanet_97929
theme: Orphanet_506207
theme: Orphanet_93890
theme: Orphanet_98036
theme: Orphanet_89826
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theme: Orphanet_98004
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theme: Orphanet_98023
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theme: Orphanet_96344
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metadata identifier: identifier
metadata issued: 2024-04-11T12:47:40.955495+00:00
metadata modified: 2024-04-11T12:47:40.955495+00:00

German Registry of Incidental Gallbladder Carcinoma (PERSUASION)- a Permanent Platform Including All Kind of Biliary Tract Cancers (BTC)
type: Resource
type: PatientRegistry
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description: PatientRegistry of German Registry of Incidental Gallbladder Carcinoma (PERSUASION)- a Permanent Platform Including All Kind of Biliary Tract Cancers (BTC)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_56044
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:43.869286+00:00
metadata modified: 2024-04-11T12:49:43.869286+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

European LeukoDataBase
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of European LeukoDataBase
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_139399
theme: Orphanet 773
theme: Orphanet_68356
theme: Orphanet 772
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:37.112257+00:00
metadata modified: 2024-04-11T12:49:37.112257+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

German PAM/MFM registry: Patient registry for hereditary protein aggregate myopathies (PAM) / myofibrillar myopathies (MFM)
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of German PAM\/MFM registry: Patient registry for hereditary protein aggregate myopathies (PAM) \/ myofibrillar myopathies (MFM)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_431272
theme: Orphanet_34516
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theme: Orphanet_97239
theme: Orphanet 607
theme: Orphanet_209053
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theme: Orphanet_98904
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theme: Orphanet 602
theme: Orphanet_59135
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:06.124517+00:00
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accessRights
type: RightsStatement
description: This resource has no access restriction

Motor Function Measure database (Neuromuscular Diseases)
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Motor Function Measure database (Neuromuscular Diseases)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_98896
theme: Orphanet 269
theme: Orphanet 273
theme: Orphanet 166
theme: Orphanet 70
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:10.997560+00:00
metadata modified: 2024-04-11T12:49:10.997560+00:00

UKIVAS Registry : UK and Ireland Vasculitis registry
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of UKIVAS Registry : UK and Ireland Vasculitis registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_52759
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:33.460221+00:00
metadata modified: 2024-04-11T12:48:33.460221+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

chILD-EU-registry: European Patient Registry for Rare Lung Diseases in Children - contributes to eurILDreg (European ILD Registry and Biobank)
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of chILD-EU-registry: European Patient Registry for Rare Lung Diseases in Children - contributes to eurILDreg (European ILD Registry and Biobank)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_101944
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:07.864763+00:00
metadata modified: 2024-04-11T12:48:07.864763+00:00

The Global aHUS Registry - UK
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of The Global aHUS Registry - UK
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 2134
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:03.517853+00:00
metadata modified: 2024-04-11T12:49:03.517853+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

Paroxysmal Nocturnal Hemoglobinuria Registry
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Paroxysmal Nocturnal Hemoglobinuria Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 447
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:16.186433+00:00
metadata modified: 2024-04-11T12:49:16.186433+00:00

PHARMACHILD patient registry: Long-term pharmacovigilance for adverse effects in childhood arthritis, focusing on immune modulatory drugs (part of PRINTO network)
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of PHARMACHILD patient registry: Long-term pharmacovigilance for adverse effects in childhood arthritis, focusing on immune modulatory drugs (part of PRINTO network)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 92
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:38.170580+00:00
metadata modified: 2024-04-11T12:47:38.170580+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

COST Action BM1105 Patient Registry - GnRH Network
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of COST Action BM1105 Patient Registry - GnRH Network
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 467
theme: Orphanet_174590
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:13.778967+00:00
metadata modified: 2024-04-11T12:48:13.778967+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

Pediatric registry for congenital pulmonary malformations
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Pediatric registry for congenital pulmonary malformations
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 3161
theme: Orphanet 2444
theme: Orphanet 1928
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:06.609973+00:00
metadata modified: 2024-04-11T12:48:06.609973+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

SIER-CV: Information System on rare diseases in Valencian Community (Spain)
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of SIER-CV: Information System on rare diseases in Valencian Community (Spain)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_101433
theme: Orphanet_98047
theme: Orphanet_98006
theme: Orphanet_52662
theme: Orphanet_97978
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theme: Orphanet_98023
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theme: Orphanet_98028
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theme: Orphanet_68367
theme: Orphanet_97962
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theme: Orphanet_97955
theme: Orphanet_68329
theme: Orphanet_98050
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theme: Orphanet_89826
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personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:42.396259+00:00
metadata modified: 2024-04-11T12:47:42.396259+00:00

National Registry for Haemoglobinopathies in Greece (NRHG)
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of National Registry for Haemoglobinopathies in Greece (NRHG)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_68364
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:12.947865+00:00
metadata modified: 2024-04-11T12:49:12.947865+00:00

SIERMA: Information system on rare diseases in Madrid (Spain)
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of SIERMA: Information system on rare diseases in Madrid (Spain)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 774
theme: Orphanet 399
theme: Orphanet 908
theme: Orphanet 803
theme: Orphanet 646
theme: Orphanet_93108
theme: Orphanet 375
theme: Orphanet 586
theme: Orphanet 558
theme: Orphanet_618899
theme: Orphanet 716
theme: Orphanet 72
theme: Orphanet 739
theme: Orphanet 273
theme: Orphanet 666
theme: Orphanet_98878
theme: Orphanet 116
theme: Orphanet 70
theme: Orphanet 805
theme: Orphanet 355
theme: Orphanet 95
theme: Orphanet 905
theme: Orphanet 324
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:45.809750+00:00
metadata modified: 2024-04-11T12:47:45.809750+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Fabry Disease Registry & Pregnancy Sub-registry - DE
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Fabry Disease Registry & Pregnancy Sub-registry - DE
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 324
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:44.197472+00:00
metadata modified: 2024-04-11T12:48:44.197472+00:00

MPN Registry: German MPN Register and Biomaterial Bank for BCR-ABL1-negative myeloid neoplasias
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of MPN Registry: German MPN Register and Biomaterial Bank for BCR-ABL1-negative myeloid neoplasias
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_168940
theme: Orphanet 3318
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theme: Orphanet 2467
theme: Orphanet_168956
theme: Orphanet 729
theme: Orphanet_86830
theme: Orphanet_86829
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:53.722924+00:00
metadata modified: 2024-04-11T12:47:53.722924+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

GPOH-MET Registry: Prospective, multicentre registry for the detection of malignant endocrine tumours in childhood and adolescence
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of GPOH-MET Registry: Prospective, multicentre registry for the detection of malignant endocrine tumours in childhood and adolescence
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 146
theme: Orphanet_319487
theme: Orphanet_99361
theme: Orphanet_100092
theme: Orphanet 1332
theme: Orphanet_100091
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:47.053257+00:00
metadata modified: 2024-04-11T12:47:47.053257+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin lymphoma in children and adolescents
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin lymphoma in children and adolescents
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 547
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:30.931770+00:00
metadata modified: 2024-04-11T12:48:30.931770+00:00

Austrian Registry on Acquired Hemophilia
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Austrian Registry on Acquired Hemophilia
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_599480
theme: Orphanet_599485
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:25.580518+00:00
metadata modified: 2024-04-11T12:48:25.580518+00:00

Italian Registry of GH treatment (RNAOC)
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Italian Registry of GH treatment (RNAOC)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 631
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:14.853715+00:00
metadata modified: 2024-04-11T12:49:14.853715+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Registry for Wolfram syndrome, Astrom syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes contributing do EURO-WABB
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Registry for Wolfram syndrome, Astrom syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes contributing do EURO-WABB
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_49827
theme: Orphanet 64
theme: Orphanet 1667
theme: Orphanet 3463
theme: Orphanet 110
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:08.541901+00:00
metadata modified: 2024-04-11T12:48:08.541901+00:00

NF-10 - Prospective collection of potentially prognostically relevant data in patients with indolent non-follicular B-cell lymphoma
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of NF-10 - Prospective collection of potentially prognostically relevant data in patients with indolent non-follicular B-cell lymphoma
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_300912
theme: Orphanet_67038
theme: Orphanet_178557
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:26.790590+00:00
metadata modified: 2024-04-11T12:48:26.790590+00:00

RaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of RaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 829
theme: Orphanet_85414
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:55.068297+00:00
metadata modified: 2024-04-11T12:48:55.068297+00:00

RaDiCo-PID: National cohort on Idiopathic Interstitial Pneumonia from infancy to elderly
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of RaDiCo-PID: National cohort on Idiopathic Interstitial Pneumonia from infancy to elderly
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_182095
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:52.488057+00:00
metadata modified: 2024-04-11T12:48:52.488057+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Spanish registry of pulmonary Langerhans cell histiocytosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Spanish registry of pulmonary Langerhans cell histiocytosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 389
personal data: false
metadata identifier: identifier
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Sicilian Registry of Thalassemia and Hemoglobinopathies (Re.S.T.E.)
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metadata issued: 2024-04-11T12:49:22.960942+00:00
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Mucopolysaccharidosis type 1 (MPS I) Registry - DE
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description: PatientRegistry of Mucopolysaccharidosis type 1 (MPS I) Registry - DE
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:42.898624+00:00
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RERGA: Registry for rare diseases in Galicia (Spain)
type: PatientRegistry
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description: PatientRegistry of RERGA: Registry for rare diseases in Galicia (Spain)
has version: 1.0
keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
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accessRights
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accessRights
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CERTAIN: Cooperative European Paediatric Renal Transplant Initiative registry
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description: PatientRegistry of CERTAIN: Cooperative European Paediatric Renal Transplant Initiative registry
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:35.726543+00:00
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RaDiCo-FARD: National cohort for the evaluation of individual burden in the course of rare skin diseases
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description: PatientRegistry of RaDiCo-FARD: National cohort for the evaluation of individual burden in the course of rare skin diseases
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:00.150014+00:00
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Neuro-Heart-Registry: Registry for patients with heart involment in neurovascular diseases
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description: PatientRegistry of Neuro-Heart-Registry: Registry for patients with heart involment in neurovascular diseases
has version: 1.0
keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 366
theme: Orphanet 370
theme: Orphanet 45
theme: Orphanet 371
theme: Orphanet 158
theme: Orphanet_207052
theme: Orphanet 261
theme: Orphanet 607
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theme: Orphanet_206973
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theme: Orphanet 365
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RaDiCo-AC-OEIL: National cohort on congenital defects of the eye : natural history, genetic determinisms and improved ocular and extra-ocular outcome prediction for better patient management
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description: PatientRegistry of RaDiCo-AC-OEIL: National cohort on congenital defects of the eye : natural history, genetic determinisms and improved ocular and extra-ocular outcome prediction for better patient management
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license: v1.0.txt
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  url: https://www.orpha.net/
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Ceprotin Treatment Registry
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description: PatientRegistry of Ceprotin Treatment Registry
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license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 745
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:26.178914+00:00
metadata modified: 2024-04-11T12:48:26.178914+00:00

Osteogenesis Imperfecta Registry - ROI
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description: PatientRegistry of Osteogenesis Imperfecta Registry - ROI
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:47:51.767416+00:00
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Swiss Primary Ciliary Dyskinesia Registry (CH-PCD)- contributing to the International PCD Registry
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description: PatientRegistry of Swiss Primary Ciliary Dyskinesia Registry (CH-PCD)- contributing to the International PCD Registry
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:16.978928+00:00
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Italian Registry of Kernicterus and hyperbilirubinemia (RIKI)
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description: PatientRegistry of Italian Registry of Kernicterus and hyperbilirubinemia (RIKI)
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keyword: PatientRegistry
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:23.658789+00:00
metadata modified: 2024-04-11T12:49:23.658789+00:00

The global aHUS Registry - FR
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description: PatientRegistry of The global aHUS Registry - FR
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license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
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World Bleeding Disorders Registry
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description: PatientRegistry of World Bleeding Disorders Registry
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license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:41.107377+00:00
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Australian Motor Neurone Disease Registry (AMNDR)
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description: PatientRegistry of Australian Motor Neurone Disease Registry (AMNDR)
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:32.490486+00:00
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Haemoglobinopathy Registry
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description: PatientRegistry of Haemoglobinopathy Registry
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:30.350270+00:00
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La Rï¿½union Fench Island registry of congenital anomalies - contributes to the EUROCAT network
type: PatientRegistry
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description: PatientRegistry of La R\u00E9union Fench Island registry of congenital anomalies - contributes to the EUROCAT network
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license: v1.0.txt
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  url: https://www.orpha.net/
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theme: Orphanet 973
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:11.749169+00:00
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CERTAIN-LI: Cooperative European Paediatric TransplAnt INitiative LIver
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:46.447546+00:00
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IRBIS: International registry for biologics in systemic lupus erythematosus
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description: PatientRegistry of IRBIS: International registry for biologics in systemic lupus erythematosus
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:38.427452+00:00
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Nordic Database for Rare Diseases
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description: PatientRegistry of Nordic Database for Rare Diseases
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license: v1.0.txt
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  url: https://www.orpha.net/
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theme: Orphanet 586
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:39.077953+00:00
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Croatian NMD Registry for Pediatrics
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description: PatientRegistry of Croatian NMD Registry for Pediatrics
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keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:34.429526+00:00
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Dutch Neuromuscular Database CRAMP: Computer Registry of All Myopathies and Polyneuropathies
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description: PatientRegistry of Dutch Neuromuscular Database CRAMP: Computer Registry of All Myopathies and Polyneuropathies
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:01.499982+00:00
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Adrenocortical Carcinoma Registry - part of the ENSAT Registry (ENS@T)
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description: PatientRegistry of Adrenocortical Carcinoma Registry - part of the ENSAT Registry (ENS@T)
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  url: https://www.orpha.net/
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metadata identifier: identifier
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accessRights
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TuberOus SClerosis registry to increase disease Awareness (TOSCA) - UK
type: PatientRegistry
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description: PatientRegistry of TuberOus SClerosis registry to increase disease Awareness (TOSCA) - UK
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keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 805
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:04.152213+00:00
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accessRights
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accessRights
type: RightsStatement
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Bulgarian registry of patients with hereditary angioedema
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type: Resource
access rights: accessRights
description: PatientRegistry of Bulgarian registry of patients with hereditary angioedema
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
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personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:33.169632+00:00
metadata modified: 2024-04-11T12:49:33.169632+00:00

Czech national Diamond-Blackfan Anemia Registry
type: Resource
type: PatientRegistry
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description: PatientRegistry of Czech national Diamond-Blackfan Anemia Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 124
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:28.328223+00:00
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accessRights
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Registry for Patients with Niemann-Pick Type C Disease
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type: Resource
access rights: accessRights
description: PatientRegistry of Registry for Patients with Niemann-Pick Type C Disease
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keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 646
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:04.639640+00:00
metadata modified: 2024-04-11T12:48:04.639640+00:00

GENEPSO: French BRCA1 and 2 carrier cohort study
type: PatientRegistry
type: Resource
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description: PatientRegistry of GENEPSO: French BRCA1 and 2 carrier cohort study
has version: 1.0
keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 145
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:05.981544+00:00
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accessRights
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accessRights
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RERIB: Population registry of rare diseases of Balearic Islands (Spain)
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access rights: accessRights
description: PatientRegistry of RERIB: Population registry of rare diseases of Balearic Islands (Spain)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 116
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theme: Orphanet 95
theme: Orphanet 805
theme: Orphanet 905
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theme: Orphanet 324
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theme: Orphanet 399
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theme: Orphanet 558
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theme: Orphanet 273
theme: Orphanet 72
theme: Orphanet 739
theme: Orphanet 666
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:41.702495+00:00
metadata modified: 2024-04-11T12:47:41.702495+00:00

CRRD: Central Registry of Rare Diseases
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access rights: accessRights
description: PatientRegistry of CRRD: Central Registry of Rare Diseases
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keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:47:49.690956+00:00
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accessRights
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PanGen-FAM: Spanish registry of hereditary pancreatic cancer
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description: PatientRegistry of PanGen-FAM: Spanish registry of hereditary pancreatic cancer
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keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 1333
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:07.578838+00:00
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Italian register multiple endocrine neoplasia type 1
type: PatientRegistry
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access rights: accessRights
description: PatientRegistry of Italian register multiple endocrine neoplasia type 1
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keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 652
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:20.851976+00:00
metadata modified: 2024-04-11T12:49:20.851976+00:00

French West Indies registry of congenital anomalies - contributes to the EUROCAT network
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of French West Indies registry of congenital anomalies - contributes to the EUROCAT network
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 3384
theme: Orphanet 660
theme: Orphanet_93321
theme: Orphanet_498464
theme: Orphanet 3380
theme: Orphanet 1329
theme: Orphanet 2440
theme: Orphanet 1048
theme: Orphanet 1201
theme: Orphanet 823
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theme: Orphanet_98553
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theme: Orphanet 883
theme: Orphanet 1203
theme: Orphanet 3091
theme: Orphanet 2911
theme: Orphanet 2445
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Estonian Rare Diseases Registry for Wolfram syndrome, Alstrï¿½m syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes - contribuiting to EURO-WABB
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Estonian Rare Diseases Registry for Wolfram syndrome, Alstr\u00F6m syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes - contribuiting to EURO-WABB
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keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
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theme: Orphanet 64
theme: Orphanet 1667
theme: Orphanet 3463
theme: Orphanet 110
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:12.471002+00:00
metadata modified: 2024-04-11T12:48:12.471002+00:00

accessRights
type: RightsStatement
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National NF Register
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of National NF Register
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keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_93921
theme: Orphanet 637
theme: Orphanet 636
theme: Orphanet 2678
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metadata identifier: identifier
metadata issued: 2024-04-11T12:47:50.337776+00:00
metadata modified: 2024-04-11T12:47:50.337776+00:00

Hereditary TTP Registry
type: Resource
type: PatientRegistry
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description: PatientRegistry of Hereditary TTP Registry
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keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:45.189284+00:00
metadata modified: 2024-04-11T12:49:45.189284+00:00

accessRights
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description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

The Hungarian patient registries for Spinal Muscular Atrophy
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type: Resource
access rights: accessRights
description: PatientRegistry of The Hungarian patient registries for Spinal Muscular Atrophy
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 70
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:55.059095+00:00
metadata modified: 2024-04-11T12:47:55.059095+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Membranous Nephropathy Registry
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Membranous Nephropathy Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_69063
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:37.777483+00:00
metadata modified: 2024-04-11T12:49:37.777483+00:00

RaDiCo-COBBALT: National cohort on Bardet-Bield syndrome and Alstrï¿½m syndrome
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of RaDiCo-COBBALT: National cohort on Bardet-Bield syndrome and Alstr\u00F6m syndrome
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 64
theme: Orphanet 110
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:58.259443+00:00
metadata modified: 2024-04-11T12:48:58.259443+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

The Dysferlin Registry/LGMD2B/Miyoshi Myopathy 1
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of The Dysferlin Registry\/LGMD2B\/Miyoshi Myopathy 1
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 268
theme: Orphanet_45448
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:42.429063+00:00
metadata modified: 2024-04-11T12:49:42.429063+00:00

RaDiCo-SED-VASC: National cohort on vascular Ehlers-Danlos syndrome
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of RaDiCo-SED-VASC: National cohort on vascular Ehlers-Danlos syndrome
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 286
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:40.819959+00:00
metadata modified: 2024-04-11T12:48:40.819959+00:00

National database for echinococcosis
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of National database for echinococcosis
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keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 400
theme: Orphanet 284
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:08.190536+00:00
metadata modified: 2024-04-11T12:49:08.190536+00:00

FSHD registry
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of FSHD registry
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keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 269
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:00.809655+00:00
metadata modified: 2024-04-11T12:49:00.809655+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Thrombotic Thrombocytopenia Purpura / Thrombotic Microangiopathies Registry (TTP/TMA)
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Thrombotic Thrombocytopenia Purpura \/ Thrombotic Microangiopathies Registry (TTP\/TMA)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:49.107094+00:00
metadata modified: 2024-04-11T12:49:49.107094+00:00

EUROMAC: Registry of patients affected by McArdle Disease
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type: PatientRegistry
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description: PatientRegistry of EUROMAC: Registry of patients affected by McArdle Disease
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keyword: PatientRegistry
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license: v1.0.txt
publisher: Orphanet
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  url: https://www.orpha.net/
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theme: Orphanet 370
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theme: Orphanet 368
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:01.158826+00:00
metadata modified: 2024-04-11T12:48:01.158826+00:00

Rare Cancer Genetics Registry (RCGR)
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type: Resource
access rights: accessRights
description: PatientRegistry of Rare Cancer Genetics Registry (RCGR)
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keyword: PatientRegistry
language: en
license: v1.0.txt
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contact point: Agent
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metadata identifier: identifier
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metadata modified: 2024-04-11T12:47:52.448517+00:00

DYSTRACT: German Dystonia Registry
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type: PatientRegistry
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description: PatientRegistry of DYSTRACT: German Dystonia Registry
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keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:40.147323+00:00
metadata modified: 2024-04-11T12:48:40.147323+00:00

PROGNOSIS : The Prospective German Non-CF-Bronchiectasis Registry - contributes to EMBARC registry
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type: PatientRegistry
access rights: accessRights
description: PatientRegistry of PROGNOSIS : The Prospective German Non-CF-Bronchiectasis Registry - contributes to EMBARC registry
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keyword: PatientRegistry
language: en
license: v1.0.txt
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contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 3471
theme: Orphanet 244
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:09.170211+00:00
metadata modified: 2024-04-11T12:48:09.170211+00:00

accessRights
type: RightsStatement
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TIRCON: NBIA (Neurodegeneration with Brain Iron Accumulation) patient registry
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of TIRCON: NBIA (Neurodegeneration with Brain Iron Accumulation) patient registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
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contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 385
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:10.430866+00:00
metadata modified: 2024-04-11T12:48:10.430866+00:00

AGMT (Arbeitsgemeinschaft medikamentï¿½se Tumortherapie): Head and neck tumor registry Austria
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of AGMT (Arbeitsgemeinschaft medikament\u00F6se Tumortherapie): Head and neck tumor registry Austria
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keyword: PatientRegistry
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publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:28.771838+00:00
metadata modified: 2024-04-11T12:48:28.771838+00:00

Registry for C3 Glomerulopathy and Immune complex-mediated MPGN
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type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Registry for C3 Glomerulopathy and Immune complex-mediated MPGN
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keyword: PatientRegistry
language: en
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contact point: Agent
  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:47.028616+00:00
metadata modified: 2024-04-11T12:48:47.028616+00:00

accessRights
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Blue cone monochromatism - Patient registry
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type: Resource
access rights: accessRights
description: PatientRegistry of Blue cone monochromatism - Patient registry
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keyword: PatientRegistry
language: en
license: v1.0.txt
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contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 16
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:16.335382+00:00
metadata modified: 2024-04-11T12:48:16.335382+00:00

accessRights
type: RightsStatement
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accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Rare disease registry of Aragon (Spain)
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Rare disease registry of Aragon (Spain)
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metadata identifier: identifier
metadata issued: 2024-04-11T12:47:39.539899+00:00
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accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

FAIR Data Point Profile

accessRights
type: RightsStatement
description: This resource has no access restriction

AGMT (Arbeitsgemeinschaft medikamentï¿½se Tumortherapie): ALL-Registry : Registry and Biobank for the collection of clinical data and biomaterial from adult ALL patients
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type: PatientRegistry
access rights: accessRights
description: PatientRegistry of AGMT (Arbeitsgemeinschaft medikament\u00F6se Tumortherapie): ALL-Registry : Registry and Biobank for the collection of clinical data and biomaterial from adult ALL patients
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  url: https://www.orpha.net/
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theme: Orphanet_300846
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:22.239070+00:00
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accessRights
type: RightsStatement
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French Disease Registry for Wolfram syndrome, Alstrï¿½m syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes - contributes to EURO-WABB
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of French Disease Registry for Wolfram syndrome, Alstr\u00F6m syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes - contributes to EURO-WABB
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keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
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theme: Orphanet 110
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:13.121221+00:00
metadata modified: 2024-04-11T12:48:13.121221+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

Registry for rare thyroid and parathyroid carcinoma
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Registry for rare thyroid and parathyroid carcinoma
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keyword: PatientRegistry
language: en
license: v1.0.txt
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contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_100088
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personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:35.578798+00:00
metadata modified: 2024-04-11T12:48:35.578798+00:00

Mykke : German registry for children and adolescents with myocarditis
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Mykke : German registry for children and adolescents with myocarditis
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:20.259357+00:00
metadata modified: 2024-04-11T12:48:20.259357+00:00

Galactosemia Patient Registry
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Galactosemia Patient Registry
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keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 352
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:36.188479+00:00
metadata modified: 2024-04-11T12:48:36.188479+00:00

accessRights
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description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Lymphomas Database
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Lymphomas Database
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_98290
theme: Orphanet_223735
theme: Orphanet 3261
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:19.517910+00:00
metadata modified: 2024-04-11T12:49:19.517910+00:00

Upshaw-Schulman-Syndrome registry
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Upshaw-Schulman-Syndrome registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_93583
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:24.277528+00:00
metadata modified: 2024-04-11T12:48:24.277528+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

RaDiCo-IDMet: National and European cohort on Imprinting Disorders and their metabolic consequences
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of RaDiCo-IDMet: National and European cohort on Imprinting Disorders and their metabolic consequences
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_457059
theme: Orphanet_99886
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theme: Orphanet_79443
theme: Orphanet_457062
theme: Orphanet_94089
theme: Orphanet 813
theme: Orphanet_79444
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theme: Orphanet 72
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:54.388637+00:00
metadata modified: 2024-04-11T12:48:54.388637+00:00

accessRights
type: RightsStatement
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AGMT (Arbeitsgemeinschaft medikamentï¿½se Tumortherapie): PTCL registry (T-cell lymphoma in Austria)
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of AGMT (Arbeitsgemeinschaft medikament\u00F6se Tumortherapie): PTCL registry (T-cell lymphoma in Austria)
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keyword: PatientRegistry
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license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_171918
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:22.911950+00:00
metadata modified: 2024-04-11T12:48:22.911950+00:00

Turkish pediatric atypical hemolytic uremic syndrome registry
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Turkish pediatric atypical hemolytic uremic syndrome registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 2134
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:25.678774+00:00
metadata modified: 2024-04-11T12:49:25.678774+00:00

Australian Neuromuscular Disease Registry (ANMDR)
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Australian Neuromuscular Disease Registry (ANMDR)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 70
theme: Orphanet_206647
theme: Orphanet_98896
theme: Orphanet 269
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:31.070241+00:00
metadata modified: 2024-04-11T12:49:31.070241+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Intercontinental Cooperative ITP Study Group Registry
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Intercontinental Cooperative ITP Study Group Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 3002
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:39.748770+00:00
metadata modified: 2024-04-11T12:49:39.748770+00:00

RaDiCo-ECYSCO: European cystinosis cohort
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of RaDiCo-ECYSCO: European cystinosis cohort
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 213
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:51.820056+00:00
metadata modified: 2024-04-11T12:48:51.820056+00:00

European Parathyroid Tumor Registry
type: PatientRegistry
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description: PatientRegistry of European Parathyroid Tumor Registry
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keyword: PatientRegistry
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license: v1.0.txt
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metadata issued: 2024-04-11T12:47:57.158823+00:00
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Skin cancer syndrome registry Graz
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type: PatientRegistry
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description: PatientRegistry of Skin cancer syndrome registry Graz
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
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  url: https://www.orpha.net/
theme: Orphanet 377
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:31.557543+00:00
metadata modified: 2024-04-11T12:48:31.557543+00:00

Pompe Disease Registry - DE
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description: PatientRegistry of Pompe Disease Registry - DE
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keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
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metadata issued: 2024-04-11T12:48:44.880477+00:00
metadata modified: 2024-04-11T12:48:44.880477+00:00

Lymphoma and Related Diseases Registry (LaRDR)
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type: PatientRegistry
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description: PatientRegistry of Lymphoma and Related Diseases Registry (LaRDR)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
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metadata issued: 2024-04-11T12:49:47.778499+00:00
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MALTA CONGENITAL ANOMALIES REGISTRY (MCAR) - it contributes to EUROCAT
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description: PatientRegistry of MALTA CONGENITAL ANOMALIES REGISTRY (MCAR) - it contributes to EUROCAT
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keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 3388
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theme: Orphanet 2140
theme: Orphanet 2162
theme: Orphanet 3091
theme: Orphanet 718
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theme: Orphanet 557
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theme: Orphanet 1203
theme: Orphanet 568
theme: Orphanet 2248
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theme: Orphanet 2542
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theme: Orphanet 1198
theme: Orphanet 15
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theme: Orphanet 823
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theme: Orphanet 2014
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theme: Orphanet 883
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MyReg : Myasthenia Gravis Registry
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description: PatientRegistry of MyReg : Myasthenia Gravis Registry
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  url: https://www.orpha.net/
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metadata issued: 2024-04-11T12:49:27.685488+00:00
metadata modified: 2024-04-11T12:49:27.685488+00:00

The Irish Rare Kidney Disease Registry and Biobank
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description: PatientRegistry of The Irish Rare Kidney Disease Registry and Biobank
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keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:19.627443+00:00
metadata modified: 2024-04-11T12:48:19.627443+00:00

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accessRights
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Swiss Cleft Lip and Palate Registry
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description: PatientRegistry of Swiss Cleft Lip and Palate Registry
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keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet_68329
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metadata identifier: identifier
metadata issued: 2024-04-11T12:47:56.421022+00:00
metadata modified: 2024-04-11T12:47:56.421022+00:00

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National Haemophilia Registry - Ireland
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description: PatientRegistry of National Haemophilia Registry - Ireland
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  url: https://www.orpha.net/
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metadata issued: 2024-04-11T12:48:38.149615+00:00
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Registry for Philadelphia chromosome-positive acute lymphoblastic leukemia in childhood and adolescence
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description: PatientRegistry of Registry for Philadelphia chromosome-positive acute lymphoblastic leukemia in childhood and adolescence
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:29.539692+00:00
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ERNEST - European Registry for Myeloproliferative Neoplasms towards a better understanding of Epidemiology, Survival and Treatment
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description: PatientRegistry of ERNEST - European Registry for Myeloproliferative Neoplasms towards a better understanding of Epidemiology, Survival and Treatment
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:05.311595+00:00
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Hunter Outcome Survey (HOS): patient registry - DE
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type: PatientRegistry
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description: PatientRegistry of Hunter Outcome Survey (HOS): patient registry - DE
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keyword: PatientRegistry
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:45.528915+00:00
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FISiM Registry - Italian MDS Network
type: PatientRegistry
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description: PatientRegistry of FISiM Registry - Italian MDS Network
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keyword: PatientRegistry
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  url: https://www.orpha.net/
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metadata issued: 2024-04-11T12:49:20.189148+00:00
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DUO registry: Registry for Patients with Digital Ulcers Associated with Systemic Sclerosis
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description: PatientRegistry of DUO registry: Registry for Patients with Digital Ulcers Associated with Systemic Sclerosis
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  url: https://www.orpha.net/
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metadata identifier: identifier
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RaDiCo-PP: National cohort on periodic paralysis : clinical, genetic and medico-economic studies involving m-health monitoring tools
type: PatientRegistry
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description: PatientRegistry of RaDiCo-PP: National cohort on periodic paralysis : clinical, genetic and medico-economic studies involving m-health monitoring tools
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keyword: PatientRegistry
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:58.896515+00:00
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CUSTODES - German Cushing syndrome registry - contributes to the ERCUSYN - European Register on Cushing's Syndrome
type: Resource
type: PatientRegistry
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description: PatientRegistry of CUSTODES - German Cushing syndrome registry - contributes to the ERCUSYN - European Register on Cushing's Syndrome
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:15.096738+00:00
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accessRights
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accessRights
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accessRights
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accessRights
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accessRights
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accessRights
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Spanish Rheumatology Society Lupus Registry
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description: PatientRegistry of Spanish Rheumatology Society Lupus Registry
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keyword: PatientRegistry
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:25.019794+00:00
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European registry of sporadic degenerative ataxia with adult onset
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description: PatientRegistry of European registry of sporadic degenerative ataxia with adult onset
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keyword: PatientRegistry
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:12.250353+00:00
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Transthyretin amyloid neuropathy (TTR-FAP) italian registry
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description: PatientRegistry of Transthyretin amyloid neuropathy (TTR-FAP) italian registry
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:05.446845+00:00
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accessRights
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accessRights
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accessRights
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accessRights
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accessRights
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Tuscan Registry of Congenital Anomalies
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description: PatientRegistry of Tuscan Registry of Congenital Anomalies
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keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 2182
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theme: Orphanet 1201
theme: Orphanet 2368
theme: Orphanet 823
theme: Orphanet 2299
theme: Orphanet 1202
theme: Orphanet_98553
theme: Orphanet 2014
theme: Orphanet 860
theme: Orphanet 883
theme: Orphanet 3091
theme: Orphanet 1203
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theme: Orphanet 3388
theme: Orphanet 2006
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theme: Orphanet 2140
theme: Orphanet 2162
theme: Orphanet 718
theme: Orphanet_88991
theme: Orphanet 3380
theme: Orphanet 557
theme: Orphanet 3027
theme: Orphanet 1666
theme: Orphanet 568
theme: Orphanet 2248
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theme: Orphanet 1478
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theme: Orphanet 3090
theme: Orphanet_83463
theme: Orphanet 1880
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:10.324264+00:00
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Innsbruck registry for Adamantiades-Behcet disease: Retrospective and prospective data collection
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description: PatientRegistry of Innsbruck registry for Adamantiades-Behcet disease: Retrospective and prospective data collection
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:27.478755+00:00
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Default Publisher
type: Agent

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accessRights
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UK facioscapulohumeral muscular dystrophy patient registry
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type: PatientRegistry
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description: PatientRegistry of UK facioscapulohumeral muscular dystrophy patient registry
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keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
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metadata issued: 2024-04-11T12:48:46.167882+00:00
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Patient Registry Profile

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Swiss Childhood Cancer Registry
type: Resource
type: PatientRegistry
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description: PatientRegistry of Swiss Childhood Cancer Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:34.140448+00:00
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accessRights
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GPOH-registry sickle cell disease
type: PatientRegistry
type: Resource
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description: PatientRegistry of GPOH-registry sickle cell disease
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keyword: PatientRegistry
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:06.867766+00:00
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Australian Bleeding Disorders Registry (ABDR)
type: Resource
type: PatientRegistry
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description: PatientRegistry of Australian Bleeding Disorders Registry (ABDR)
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keyword: PatientRegistry
language: en
license: v1.0.txt
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contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_169802
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:31.772934+00:00
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Epidemiologic Registry of Patients Diagnosed With Acute Myeloid Leukemia - ES
type: Resource
type: PatientRegistry
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description: PatientRegistry of Epidemiologic Registry of Patients Diagnosed With Acute Myeloid Leukemia - ES
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keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 519
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:09.698950+00:00
metadata modified: 2024-04-11T12:49:09.698950+00:00

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EBCare Registry
type: PatientRegistry
type: Resource
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description: PatientRegistry of EBCare Registry
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keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 305
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personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:40.377353+00:00
metadata modified: 2024-04-11T12:49:40.377353+00:00

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RERNA: Population-based Rare Disease Registry of Navarre (Spain)
type: PatientRegistry
type: Resource
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description: PatientRegistry of RERNA: Population-based Rare Disease Registry of Navarre (Spain)
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keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:47:40.252020+00:00
metadata modified: 2024-04-11T12:47:40.252020+00:00

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National Cleft Database
type: Resource
type: PatientRegistry
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description: PatientRegistry of National Cleft Database
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
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  url: https://www.orpha.net/
theme: Orphanet_139039
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:37.538337+00:00
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Thymic Malignancy Interest Group International Database
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type: PatientRegistry
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description: PatientRegistry of Thymic Malignancy Interest Group International Database
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keyword: PatientRegistry
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license: v1.0.txt
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  url: https://www.orpha.net/
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:43.181987+00:00
metadata modified: 2024-04-11T12:49:43.181987+00:00

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International GNE Myopathy Registry
type: PatientRegistry
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description: PatientRegistry of International GNE Myopathy Registry
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keyword: PatientRegistry
language: en
license: v1.0.txt
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  url: https://www.orpha.net/
theme: Orphanet 602
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metadata identifier: identifier
metadata issued: 2024-04-11T12:48:01.905195+00:00
metadata modified: 2024-04-11T12:48:01.905195+00:00

accessRights
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accessRights
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accessRights
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accessRights
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accessRights
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Global Angelman Syndrome Registry
type: PatientRegistry
type: Resource
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description: PatientRegistry of Global Angelman Syndrome Registry
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RaDiCo-DCP: National cohort on Primary Ciliary Dyskinesia (PCD) : Identification of specific severity criteria and phenotype-genotype correlation study
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Hellenic Neuromuscular Disorders Registry
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Behï¿½et's disease Italian registry
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RaDiCo-RETICO: National cohort on inherited retinal dystrophies
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SwissNET - Registry for Neuroendocrine Tumours in Switzerland
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National registry for retroperitoneal fibrosis
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Population registry of rare diseases and congenital anomalies of Cantabria (Spain)
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Myeloma and Related Diseases Registry (MRDR)
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http://fairdatapointorphanet.info/patientregistry/59723b6b-74bc-43e3-9470-d6f891eb2b24
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description: PatientRegistry of STRIVE: A Long-term, Multi-center, Longitudinal Post-marketing, Observational Registry to Assess Long Term Safety and Effectiveness of HUMIRA\u00AE (Adalimumab) in Children With Moderately to Severely Active Polyarticular or Polyarticular-course Juvenile Idiopathic Arthritis (JIA) - NL
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Datasets
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EURO WILSON: Creating a European Clinical Database and designing randomised controlled clinical trials for Wilson disease - UK
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Spanish registry of lymphangioleiomyomatosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
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Central data registry of the European Competence Network on Mastocytosis (ECMN)
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AGMT (Arbeitsgemeinschaft medikamentï¿½se Tumortherapie): HMA-Registry - Austrian Registry on Hypomethylating Agents in Myeloid Neoplasms
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description: PatientRegistry of AGMT (Arbeitsgemeinschaft medikament\u00F6se Tumortherapie): HMA-Registry - Austrian Registry on Hypomethylating Agents in Myeloid Neoplasms
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The Orphanet catalogue of registries and biobanks
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National patient registry rare histiocytic disorders - contributes to the International Rare Histiocytic Disorders Registry (IRHDR)
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RaDiCo-GenIDA: International social network for data collection on the natural history of rare monogenic forms of intellectual disabilities
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International Collaborative Gaucher Group (ICGG) Gaucher Registry - DE
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description: PatientRegistry of International Collaborative Gaucher Group (ICGG) Gaucher Registry - DE
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metadata issued: 2024-04-11T12:48:43.537846+00:00
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Data Services
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German CMT-patient registry germany
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The national Polish pediatric IgAN registry
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description: PatientRegistry of The national Polish pediatric IgAN registry
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German registry for Langerhans Cell Histiocytosis in childhood (LCH-REG-DE 2013)
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metadata issued: 2024-04-11T12:48:47.711772+00:00
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Biobanks
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Italian Registry of Mastocytosis
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description: PatientRegistry of Italian Registry of Mastocytosis
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metadata issued: 2024-04-11T12:49:16.797804+00:00
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AGMT (Arbeitsgemeinschaft medikamentï¿½se Tumortherapie): MBC-Registry (Metastatic breast cancer in Austria)
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description: PatientRegistry of AGMT (Arbeitsgemeinschaft medikament\u00F6se Tumortherapie): MBC-Registry (Metastatic breast cancer in Austria)
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Patient Registries
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NMD-ES: Spanish Registry of Neuromuscular Diseases
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Danish registry for neuromuscular diseases
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description: PatientRegistry of Danish registry for neuromuscular diseases
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iNTD (International Working Group on Neurotransmitter Related Disorders) Registry
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French severe chronic neutropenia certified patient registry - contributes to the SCN international registry (SCNIR)
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National Severe Immunodeficiency Registry - contributes to ESID registry
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ORPHADATA
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description: Orphadata provides the scientific community with comprehensive, massive, re-usable and computable quality data sets related to rare diseases from the Orphanet knowledge base.
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National Registry of congenital bleeding disorders (RNCC)
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metadata identifier: identifier
metadata issued: 2024-04-11T12:49:14.233567+00:00
metadata modified: 2024-04-11T12:49:14.233567+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

UKPSSR : United Kingdom Primary Sjogren's Syndrome Registry
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of UKPSSR : United Kingdom Primary Sjogren's Syndrome Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 816
theme: Orphanet 559
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:26.389254+00:00
metadata modified: 2024-04-11T12:49:26.389254+00:00

UK national Acromegaly patient register
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of UK national Acromegaly patient register
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 963
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:51.048865+00:00
metadata modified: 2024-04-11T12:47:51.048865+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

Gaucher disease registry model
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Gaucher disease registry model
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 355
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:04.776890+00:00
metadata modified: 2024-04-11T12:49:04.776890+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

CCIR registry: Cure Cystinosis International Registry
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of CCIR registry: Cure Cystinosis International Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 213
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:47.718971+00:00
metadata modified: 2024-04-11T12:47:47.718971+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

French National Lymphangioleiomyomatosis Registry (RE-LAM-CE)
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of French National Lymphangioleiomyomatosis Registry (RE-LAM-CE)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 538
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:53.059791+00:00
metadata modified: 2024-04-11T12:47:53.059791+00:00

Catalog Profile

RaDiCo-COLPAC: National cohort on the epidemiology, clinical and genetic heterogeneity of Low Phospholipid-Associated Cholelithiasis (LPAC) syndrome
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of RaDiCo-COLPAC: National cohort on the epidemiology, clinical and genetic heterogeneity of Low Phospholipid-Associated Cholelithiasis (LPAC) syndrome
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_69663
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:57.045916+00:00
metadata modified: 2024-04-11T12:48:57.045916+00:00

Registry for relapsing acute lymphoblastic leukemia in childhood and adolescence
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Registry for relapsing acute lymphoblastic leukemia in childhood and adolescence
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 513
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:30.275560+00:00
metadata modified: 2024-04-11T12:48:30.275560+00:00

Patient registry for retinal degeneration PRO RETINA e.V
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Patient registry for retinal degeneration PRO RETINA e.V
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_71862
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:02.856288+00:00
metadata modified: 2024-04-11T12:49:02.856288+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

INPDR : International Niemann-Pick Disease Registry
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of INPDR : International Niemann-Pick Disease Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 646
theme: Orphanet_618899
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:14.458629+00:00
metadata modified: 2024-04-11T12:48:14.458629+00:00

HTA-THAL: The Italian multi-region thalassaemia registry
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of HTA-THAL: The Italian multi-region thalassaemia registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_231214
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:18.171336+00:00
metadata modified: 2024-04-11T12:49:18.171336+00:00

National Registry of Congenital Malformations (RNMC)
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of National Registry of Congenital Malformations (RNMC)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_93890
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:17.519847+00:00
metadata modified: 2024-04-11T12:49:17.519847+00:00

National Registry of Congenital Anomalies of the Czech Republic
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of National Registry of Congenital Anomalies of the Czech Republic
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 660
theme: Orphanet 3380
theme: Orphanet 3378
theme: Orphanet 1048
theme: Orphanet 2368
theme: Orphanet 823
theme: Orphanet 870
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:28.998457+00:00
metadata modified: 2024-04-11T12:49:28.998457+00:00

NMDcy: Cypriot Neuromuscular Diseases
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of NMDcy: Cypriot Neuromuscular Diseases
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_68381
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:03.989326+00:00
metadata modified: 2024-04-11T12:48:03.989326+00:00

accessRights
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accessRights
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description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

RESIDRAS - National Registry of Dravet Syndrome and other Syndromes correlated with genes on SCN1A and PCDH19
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of RESIDRAS - National Registry of Dravet Syndrome and other Syndromes correlated with genes on SCN1A and PCDH19
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 569
theme: Orphanet_33069
theme: Orphanet_293181
theme: Orphanet_36387
theme: Orphanet_101039
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:44.477155+00:00
metadata modified: 2024-04-11T12:49:44.477155+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Thromboreductin-Registry
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Thromboreductin-Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 3318
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:32.851421+00:00
metadata modified: 2024-04-11T12:48:32.851421+00:00

ARegPKD - International Registry Study on Autosomal Recessive Polycystic Kidney Disease
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of ARegPKD - International Registry Study on Autosomal Recessive Polycystic Kidney Disease
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 731
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:11.109673+00:00
metadata modified: 2024-04-11T12:48:11.109673+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

REPA: Spanish registry of alveolar proteinosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of REPA: Spanish registry of alveolar proteinosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_264675
theme: Orphanet 747
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:44.534062+00:00
metadata modified: 2024-04-11T12:47:44.534062+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_98053
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:21.538437+00:00
metadata modified: 2024-04-11T12:48:21.538437+00:00

Ring14 Clinical database
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Ring14 Clinical database
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 1440
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:21.557929+00:00
metadata modified: 2024-04-11T12:49:21.557929+00:00

REHIPED: Spanish Registry for Pediatric Pulmonary Hypertension
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of REHIPED: Spanish Registry for Pediatric Pulmonary Hypertension
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_71198
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:47:54.437104+00:00
metadata modified: 2024-04-11T12:47:54.437104+00:00

RaDiCo-EURBIO-Alport: Study of the natural history of Alport Syndrome by establishment of an international database
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of RaDiCo-EURBIO-Alport: Study of the natural history of Alport Syndrome by establishment of an international database
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 63
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:55.748237+00:00
metadata modified: 2024-04-11T12:48:55.748237+00:00

French National FSHD Registry
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of French National FSHD Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 269
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:18.973799+00:00
metadata modified: 2024-04-11T12:48:18.973799+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Aplastic Anaemia Registry (AAR)
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Aplastic Anaemia Registry (AAR)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_182040
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:47.074010+00:00
metadata modified: 2024-04-11T12:49:47.074010+00:00

OPALE: A patient registry for laminopathies and emerinopathies in France
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of OPALE: A patient registry for laminopathies and emerinopathies in France
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_209188
theme: Orphanet_300751
theme: Orphanet 740
theme: Orphanet 261
theme: Orphanet_98856
theme: Orphanet 2348
theme: Orphanet_98301
theme: Orphanet_90153
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:42.140652+00:00
metadata modified: 2024-04-11T12:48:42.140652+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Tuscan Registry of Rare Diseases
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Tuscan Registry of Rare Diseases
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_57146
theme: Orphanet_97965
theme: Orphanet_250908
theme: Orphanet_93626
theme: Orphanet_101433
theme: Orphanet_98047
theme: Orphanet_98006
theme: Orphanet_52662
theme: Orphanet_97978
theme: Orphanet_97929
theme: Orphanet_98023
theme: Orphanet_108999
theme: Orphanet_506207
theme: Orphanet_98050
theme: Orphanet_68416
theme: Orphanet_98036
theme: Orphanet_96344
theme: Orphanet_93419
theme: Orphanet_165711
theme: Orphanet_98004
theme: Orphanet_97966
theme: Orphanet_98028
theme: Orphanet_98026
theme: Orphanet_280342
theme: Orphanet_68367
theme: Orphanet_97962
theme: Orphanet_97935
theme: Orphanet_97955
theme: Orphanet_68329
theme: Orphanet_97992
theme: Orphanet_93890
theme: Orphanet_89826
theme: Orphanet_98053
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:17.592379+00:00
metadata modified: 2024-04-11T12:48:17.592379+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

EXCITING Registry: Registry for Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of EXCITING Registry: Registry for Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_264735
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:39.419689+00:00
metadata modified: 2024-04-11T12:48:39.419689+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

RaDiCo-MPS: National cohort on Mucopolysaccharidosis in the era of specific therapeutics
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of RaDiCo-MPS: National cohort on Mucopolysaccharidosis in the era of specific therapeutics
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_79213
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:56.384238+00:00
metadata modified: 2024-04-11T12:48:56.384238+00:00

The Orphanet catalogue of registries and biobanks
type: DataService
type: MetadataService
type: Resource
type: FAIRDataPoint
access rights: accessRights
description: Orphanet provides information on Patient registries (systematic collections of clinical data for clinical research explicitly focused on a particular rare disease or group of diseases governed by an identified body). Orphanet provides information on Biobanks (any kind of systematic, open-for-collaboration register of biological specimen for clinical research with a clear orientation towards the field of rare diseases).
has version: 1.0
keyword: Orphanet
keyword: Biobank
keyword: Registry
keyword: Rare diseases
language: en
license: cc-by-nc-nd3.0
publisher: Default Publisher
repository identifier: identifier
contact point: Agent
  url: https://www.orpha.net
theme: Q114255004
personal data: false
vp connection: VPDiscoverable
fdp software version: FDP:v1.16.2~51911d6
metadata identifier: identifier
metadata issued: 2024-03-29T16:52:49.434008+00:00
metadata modified: 2025-02-17T09:37:02.525540+00:00

EURO-WABB: An EU Rare Diseases Registry for Wolfram Syndrome, Alstrom Syndrome, Bardet-Biedl Syndrome and Other Rare Diabetes Syndromes -ES
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of EURO-WABB: An EU Rare Diseases Registry for Wolfram Syndrome, Alstrom Syndrome, Bardet-Biedl Syndrome and Other Rare Diabetes Syndromes -ES
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 64
theme: Orphanet 3463
theme: Orphanet 110
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:07.210373+00:00
metadata modified: 2024-04-11T12:48:07.210373+00:00

Registry for Haemoglobinopathies
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Registry for Haemoglobinopathies
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_231214
theme: Orphanet 846
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:35.069572+00:00
metadata modified: 2024-04-11T12:49:35.069572+00:00

Polish Registry of Inherited Tubulopathies (POLtube)
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of Polish Registry of Inherited Tubulopathies (POLtube)
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_183592
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:50.507328+00:00
metadata modified: 2024-04-11T12:48:50.507328+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

Neonatal Alloimmune Thrombocytopenia (NAIT) Registry
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of Neonatal Alloimmune Thrombocytopenia (NAIT) Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 853
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:29.649265+00:00
metadata modified: 2024-04-11T12:49:29.649265+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

accessRights
type: RightsStatement
description: This resource has no access restriction

FungiScope - Global Rare Fungal Infection Registry
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of FungiScope - Global Rare Fungal Infection Registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 2583
theme: Orphanet_449280
theme: Orphanet_73263
theme: Orphanet 826
theme: Orphanet_397587
theme: Orphanet 1163
theme: Orphanet 182
theme: Orphanet_633124
theme: Orphanet_228119
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:20.865741+00:00
metadata modified: 2024-04-11T12:48:20.865741+00:00

REHem-AR-SEHOP: Spanish Registry of Hemoglobinopathies and Rare Anemias from the Spanish Society of Paediatric Haematology and Oncology
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of REHem-AR-SEHOP: Spanish Registry of Hemoglobinopathies and Rare Anemias from the Spanish Society of Paediatric Haematology and Oncology
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_98365
theme: Orphanet_68364
theme: Orphanet_293830
theme: Orphanet 766
theme: Orphanet 1047
theme: Orphanet_466026
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:48:41.476348+00:00
metadata modified: 2024-04-11T12:48:41.476348+00:00

The Italian Registry of Hereditary Angioedema
type: PatientRegistry
type: Resource
access rights: accessRights
description: PatientRegistry of The Italian Registry of Hereditary Angioedema
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet_91378
personal data: false
metadata identifier: identifier
metadata issued: 2024-04-11T12:49:15.513525+00:00
metadata modified: 2024-04-11T12:49:15.513525+00:00

accessRights
type: RightsStatement
description: This resource has no access restriction

International aHUS registry
type: Resource
type: PatientRegistry
access rights: accessRights
description: PatientRegistry of International aHUS registry
has version: 1.0
keyword: PatientRegistry
language: en
license: v1.0.txt
publisher: Orphanet
contact point: Agent
  url: https://www.orpha.net/
theme: Orphanet 2134
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Sudden Cardiac Death in the Young Registry
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Registry of Neurofibromatosis
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German patient registry HLH (hemophagocytic lymphohistiocytosis)
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SCETIDE - Stem CEll Transplant for primary Immune Deficiencies in Europe
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The SICCA registry: Sjogren's International Collaborative Clinical Alliance registry
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