Estonian Rare Diseases Registry for Wolfram syndrome, Alstrï¿½m syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes - contribuiting to EURO-WABB
PatientRegistry of Estonian Rare Diseases Registry for Wolfram syndrome, Alstr\u00F6m syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes - contribuiting to EURO-WABB
PatientRegistry of Disorders of Cornification Innsbruck
PatientRegistry of World Bleeding Disorders Registry
European registry of sporadic degenerative ataxia with adult onset
PatientRegistry of European registry of sporadic degenerative ataxia with adult onset
Bulgarian registry of patients with hereditary angioedema
PatientRegistry of Bulgarian registry of patients with hereditary angioedema
German PAM/MFM registry: Patient registry for hereditary protein aggregate myopathies (PAM) / myofibrillar myopathies (MFM)
PatientRegistry of German PAM\/MFM registry: Patient registry for hereditary protein aggregate myopathies (PAM) \/ myofibrillar myopathies (MFM)
PatientRegistry of Rare disease registry of Aragon (Spain)
PatientRegistry of Haemoglobinopathy Registry
CUSTODES - German Cushing syndrome registry - contributes to the ERCUSYN - European Register on Cushing's Syndrome
PatientRegistry of CUSTODES - German Cushing syndrome registry - contributes to the ERCUSYN - European Register on Cushing's Syndrome
OPALE: A patient registry for laminopathies and emerinopathies in France
PatientRegistry of OPALE: A patient registry for laminopathies and emerinopathies in France
PatientRegistry of Hereditary TTP Registry
PatientRegistry of MyReg : Myasthenia Gravis Registry
PatientRegistry of NMDcy: Cypriot Neuromuscular Diseases
PatientRegistry of GPOH-registry sickle cell disease
Pediatric registry for congenital pulmonary malformations
PatientRegistry of Pediatric registry for congenital pulmonary malformations
Danish registry for neuromuscular diseases
PatientRegistry of Danish registry for neuromuscular diseases
SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
PatientRegistry of SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
PatientRegistry of Upshaw-Schulman-Syndrome registry
PatientRegistry of German CMT-patient registry germany
SCETIDE - Stem CEll Transplant for primary Immune Deficiencies in Europe
PatientRegistry of SCETIDE - Stem CEll Transplant for primary Immune Deficiencies in Europe
RaDiCo-MPS: National cohort on Mucopolysaccharidosis in the era of specific therapeutics
PatientRegistry of RaDiCo-MPS: National cohort on Mucopolysaccharidosis in the era of specific therapeutics
Spanish Rheumatology Society Lupus Registry
PatientRegistry of Spanish Rheumatology Society Lupus Registry
PatientRegistry of French National FSHD Registry
Swiss Primary Ciliary Dyskinesia Registry (CH-PCD)- contributing to the International PCD Registry
PatientRegistry of Swiss Primary Ciliary Dyskinesia Registry (CH-PCD)- contributing to the International PCD Registry
PatientRegistry of International GNE Myopathy Registry
PatientRegistry of National Cleft Database
Neuro-Heart-Registry: Registry for patients with heart involment in neurovascular diseases
PatientRegistry of Neuro-Heart-Registry: Registry for patients with heart involment in neurovascular diseases
PatientRegistry of FISiM Registry - Italian MDS Network
National patient registry rare histiocytic disorders - contributes to the International Rare Histiocytic Disorders Registry (IRHDR)
PatientRegistry of National patient registry rare histiocytic disorders - contributes to the International Rare Histiocytic Disorders Registry (IRHDR)
PatientRegistry of Ring14 Clinical database
French National Lymphangioleiomyomatosis Registry (RE-LAM-CE)
PatientRegistry of French National Lymphangioleiomyomatosis Registry (RE-LAM-CE)
Irish Registry for homocystinurias and methylation defects - contributes to E-HOD
PatientRegistry of Irish Registry for homocystinurias and methylation defects - contributes to E-HOD
Italian register multiple endocrine neoplasia type 1
PatientRegistry of Italian register multiple endocrine neoplasia type 1
EURO-WABB: An EU Rare Diseases Registry for Wolfram Syndrome, Alstrom Syndrome, Bardet-Biedl Syndrome and Other Rare Diabetes Syndromes -ES
PatientRegistry of EURO-WABB: An EU Rare Diseases Registry for Wolfram Syndrome, Alstrom Syndrome, Bardet-Biedl Syndrome and Other Rare Diabetes Syndromes -ES
Registry for rare thyroid and parathyroid carcinoma
PatientRegistry of Registry for rare thyroid and parathyroid carcinoma
NF-10 - Prospective collection of potentially prognostically relevant data in patients with indolent non-follicular B-cell lymphoma
PatientRegistry of NF-10 - Prospective collection of potentially prognostically relevant data in patients with indolent non-follicular B-cell lymphoma
MPN Registry: German MPN Register and Biomaterial Bank for BCR-ABL1-negative myeloid neoplasias
PatientRegistry of MPN Registry: German MPN Register and Biomaterial Bank for BCR-ABL1-negative myeloid neoplasias
Population registry of rare diseases and congenital anomalies of Cantabria (Spain)
PatientRegistry of Population registry of rare diseases and congenital anomalies of Cantabria (Spain)
Patient registry for retinal degeneration PRO RETINA e.V
PatientRegistry of Patient registry for retinal degeneration PRO RETINA e.V
Transthyretin amyloid neuropathy (TTR-FAP) italian registry
PatientRegistry of Transthyretin amyloid neuropathy (TTR-FAP) italian registry
INPDR : International Niemann-Pick Disease Registry
PatientRegistry of INPDR : International Niemann-Pick Disease Registry
SIER-CV: Information System on rare diseases in Valencian Community (Spain)
PatientRegistry of SIER-CV: Information System on rare diseases in Valencian Community (Spain)
PatientRegistry of Pompe Disease Registry - DE
SwissNET - Registry for Neuroendocrine Tumours in Switzerland
PatientRegistry of SwissNET - Registry for Neuroendocrine Tumours in Switzerland
PatientRegistry of The global aHUS Registry - FR
PatientRegistry of National Haemophilia Registry - Ireland
REPA: Spanish registry of alveolar proteinosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
PatientRegistry of REPA: Spanish registry of alveolar proteinosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
PatientRegistry of Swiss Cleft Lip and Palate Registry
IRBIS: International registry for biologics in systemic lupus erythematosus
PatientRegistry of IRBIS: International registry for biologics in systemic lupus erythematosus
International Collaborative Gaucher Group (ICGG) Gaucher Registry - DE
PatientRegistry of International Collaborative Gaucher Group (ICGG) Gaucher Registry - DE
Central data registry of the European Competence Network on Mastocytosis (ECMN)
PatientRegistry of Central data registry of the European Competence Network on Mastocytosis (ECMN)
Thrombotic Thrombocytopenia Purpura / Thrombotic Microangiopathies Registry (TTP/TMA)
PatientRegistry of Thrombotic Thrombocytopenia Purpura \/ Thrombotic Microangiopathies Registry (TTP\/TMA)
PatientRegistry of UK national Acromegaly patient register
AGMT (Arbeitsgemeinschaft medikamentï¿½se Tumortherapie): MBC-Registry (Metastatic breast cancer in Austria)
PatientRegistry of AGMT (Arbeitsgemeinschaft medikament\u00F6se Tumortherapie): MBC-Registry (Metastatic breast cancer in Austria)
PatientRegistry of DYSTRACT: German Dystonia Registry
Sudden Cardiac Death in the Young Registry
PatientRegistry of Sudden Cardiac Death in the Young Registry
STRIVE: A Long-term, Multi-center, Longitudinal Post-marketing, Observational Registry to Assess Long Term Safety and Effectiveness of HUMIRAï¿½ (Adalimumab) in Children With Moderately to Severely Active Polyarticular or Polyarticular-course Juvenile Idiopathic Arthritis (JIA) - NL
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
PatientRegistry of CRRD: Central Registry of Rare Diseases
RaDiCo-FARD: National cohort for the evaluation of individual burden in the course of rare skin diseases
PatientRegistry of RaDiCo-FARD: National cohort for the evaluation of individual burden in the course of rare skin diseases
National Registry for Haemoglobinopathies in Greece (NRHG)
PatientRegistry of National Registry for Haemoglobinopathies in Greece (NRHG)
PatientRegistry of Italian Registry of Mastocytosis
PatientRegistry of International aHUS registry
PatientRegistry of National database for echinococcosis
PatientRegistry of Membranous Nephropathy Registry
RERGA: Registry for rare diseases in Galicia (Spain)
PatientRegistry of RERGA: Registry for rare diseases in Galicia (Spain)
RERIB: Population registry of rare diseases of Balearic Islands (Spain)
PatientRegistry of RERIB: Population registry of rare diseases of Balearic Islands (Spain)
The SICCA registry: Sjogren's International Collaborative Clinical Alliance registry
PatientRegistry of The SICCA registry: Sjogren's International Collaborative Clinical Alliance registry
The Dysferlin Registry/LGMD2B/Miyoshi Myopathy 1
PatientRegistry of The Dysferlin Registry\/LGMD2B\/Miyoshi Myopathy 1
Registry for Philadelphia chromosome-positive acute lymphoblastic leukemia in childhood and adolescence
PatientRegistry of Registry for Philadelphia chromosome-positive acute lymphoblastic leukemia in childhood and adolescence
Italian Registry of GH treatment (RNAOC)
PatientRegistry of Italian Registry of GH treatment (RNAOC)
The Hungarian patient registries for Spinal Muscular Atrophy
PatientRegistry of The Hungarian patient registries for Spinal Muscular Atrophy
PatientRegistry of Registry for Haemoglobinopathies
Registry for Wolfram syndrome, Astrom syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes contributing do EURO-WABB
PatientRegistry of Registry for Wolfram syndrome, Astrom syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes contributing do EURO-WABB
Polish Registry of Inherited Tubulopathies (POLtube)
PatientRegistry of Polish Registry of Inherited Tubulopathies (POLtube)
French Disease Registry for Wolfram syndrome, Alstrï¿½m syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes - contributes to EURO-WABB
PatientRegistry of French Disease Registry for Wolfram syndrome, Alstr\u00F6m syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes - contributes to EURO-WABB
PatientRegistry of Gaucher disease registry model
PatientRegistry of Skin cancer syndrome registry Graz
Mucopolysaccharidosis type 1 (MPS I) Registry - DE
PatientRegistry of Mucopolysaccharidosis type 1 (MPS I) Registry - DE
PatientRegistry of Tuscan Registry of Rare Diseases
Innsbruck registry for Adamantiades-Behcet disease: Retrospective and prospective data collection
PatientRegistry of Innsbruck registry for Adamantiades-Behcet disease: Retrospective and prospective data collection
PatientRegistry of Galactosemia Patient Registry
Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin lymphoma in children and adolescents
PatientRegistry of Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin lymphoma in children and adolescents
PatientRegistry of German epilepsy registry
AGMT (Arbeitsgemeinschaft medikamentï¿½se Tumortherapie): ALL-Registry : Registry and Biobank for the collection of clinical data and biomaterial from adult ALL patients
PatientRegistry of AGMT (Arbeitsgemeinschaft medikament\u00F6se Tumortherapie): ALL-Registry : Registry and Biobank for the collection of clinical data and biomaterial from adult ALL patients
chILD-EU-registry: European Patient Registry for Rare Lung Diseases in Children - contributes to eurILDreg (European ILD Registry and Biobank)
PatientRegistry of chILD-EU-registry: European Patient Registry for Rare Lung Diseases in Children - contributes to eurILDreg (European ILD Registry and Biobank)
iNTD (International Working Group on Neurotransmitter Related Disorders) Registry
PatientRegistry of iNTD (International Working Group on Neurotransmitter Related Disorders) Registry
Australian Motor Neurone Disease Registry (AMNDR)
PatientRegistry of Australian Motor Neurone Disease Registry (AMNDR)
RaDiCo-DCP: National cohort on Primary Ciliary Dyskinesia (PCD) : Identification of specific severity criteria and phenotype-genotype correlation study
PatientRegistry of RaDiCo-DCP: National cohort on Primary Ciliary Dyskinesia (PCD) : Identification of specific severity criteria and phenotype-genotype correlation study
German patient registry HLH (hemophagocytic lymphohistiocytosis)
PatientRegistry of German patient registry HLH (hemophagocytic lymphohistiocytosis)
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
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
RaDiCo-EURBIO-Alport: Study of the natural history of Alport Syndrome by establishment of an international database
PatientRegistry of RaDiCo-EURBIO-Alport: Study of the natural history of Alport Syndrome by establishment of an international database
National Registry of congenital bleeding disorders (RNCC)
PatientRegistry of National Registry of congenital bleeding disorders (RNCC)
EURO WILSON: Creating a European Clinical Database and designing randomised controlled clinical trials for Wilson disease - UK
PatientRegistry of EURO WILSON: Creating a European Clinical Database and designing randomised controlled clinical trials for Wilson disease - UK
Paroxysmal Nocturnal Hemoglobinuria Registry
PatientRegistry of Paroxysmal Nocturnal Hemoglobinuria Registry
PatientRegistry of Registry of Neurofibromatosis
German registry for Langerhans Cell Histiocytosis in childhood (LCH-REG-DE 2013)
PatientRegistry of German registry for Langerhans Cell Histiocytosis in childhood (LCH-REG-DE 2013)
GPOH-MET Registry: Prospective, multicentre registry for the detection of malignant endocrine tumours in childhood and adolescence
PatientRegistry of GPOH-MET Registry: Prospective, multicentre registry for the detection of malignant endocrine tumours in childhood and adolescence
PatientRegistry of European LeukoDataBase
RaDiCo-PP: National cohort on periodic paralysis : clinical, genetic and medico-economic studies involving m-health monitoring tools
PatientRegistry of RaDiCo-PP: National cohort on periodic paralysis : clinical, genetic and medico-economic studies involving m-health monitoring tools
Austrian Registry on Acquired Hemophilia
PatientRegistry of Austrian Registry on Acquired Hemophilia
CCIR registry: Cure Cystinosis International Registry
PatientRegistry of CCIR registry: Cure Cystinosis International Registry
Thymic Malignancy Interest Group International Database
PatientRegistry of Thymic Malignancy Interest Group International Database
RESIDRAS - National Registry of Dravet Syndrome and other Syndromes correlated with genes on SCN1A and PCDH19
PatientRegistry of RESIDRAS - National Registry of Dravet Syndrome and other Syndromes correlated with genes on SCN1A and PCDH19
RaDiCo-SED-VASC: National cohort on vascular Ehlers-Danlos syndrome
PatientRegistry of RaDiCo-SED-VASC: National cohort on vascular Ehlers-Danlos syndrome
Australian Neuromuscular Disease Registry (ANMDR)
PatientRegistry of Australian Neuromuscular Disease Registry (ANMDR)
RERNA: Population-based Rare Disease Registry of Navarre (Spain)
PatientRegistry of RERNA: Population-based Rare Disease Registry of Navarre (Spain)
Epidemiologic Registry of Patients Diagnosed With Acute Myeloid Leukemia - ES
PatientRegistry of Epidemiologic Registry of Patients Diagnosed With Acute Myeloid Leukemia - ES
AGMT (Arbeitsgemeinschaft medikamentï¿½se Tumortherapie): HMA-Registry - Austrian Registry on Hypomethylating Agents in Myeloid Neoplasms
PatientRegistry of AGMT (Arbeitsgemeinschaft medikament\u00F6se Tumortherapie): HMA-Registry - Austrian Registry on Hypomethylating Agents in Myeloid Neoplasms
National registry for retroperitoneal fibrosis
PatientRegistry of National registry for retroperitoneal fibrosis
CERTAIN-LI: Cooperative European Paediatric TransplAnt INitiative LIver
PatientRegistry of CERTAIN-LI: Cooperative European Paediatric TransplAnt INitiative LIver
RaDiCo-COLPAC: National cohort on the epidemiology, clinical and genetic heterogeneity of Low Phospholipid-Associated Cholelithiasis (LPAC) syndrome
PatientRegistry of RaDiCo-COLPAC: National cohort on the epidemiology, clinical and genetic heterogeneity of Low Phospholipid-Associated Cholelithiasis (LPAC) syndrome
Intercontinental Cooperative ITP Study Group Registry
PatientRegistry of Intercontinental Cooperative ITP Study Group Registry
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
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
Spanish registry of lymphangioleiomyomatosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
PatientRegistry of Spanish registry of lymphangioleiomyomatosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
Registry for relapsing acute lymphoblastic leukemia in childhood and adolescence
PatientRegistry of Registry for relapsing acute lymphoblastic leukemia in childhood and adolescence
TuberOus SClerosis registry to increase disease Awareness (TOSCA) - UK
PatientRegistry of TuberOus SClerosis registry to increase disease Awareness (TOSCA) - UK
RaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
PatientRegistry of RaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
Dutch Neuromuscular Database CRAMP: Computer Registry of All Myopathies and Polyneuropathies
PatientRegistry of Dutch Neuromuscular Database CRAMP: Computer Registry of All Myopathies and Polyneuropathies
NMD-ES: Spanish Registry of Neuromuscular Diseases
PatientRegistry of NMD-ES: Spanish Registry of Neuromuscular Diseases
The Irish Rare Kidney Disease Registry and Biobank
PatientRegistry of The Irish Rare Kidney Disease Registry and Biobank
FungiScope - Global Rare Fungal Infection Registry
PatientRegistry of FungiScope - Global Rare Fungal Infection Registry
La Rï¿½union Fench Island registry of congenital anomalies - contributes to the EUROCAT network
PatientRegistry of La R\u00E9union Fench Island registry of congenital anomalies - contributes to the EUROCAT network
Hunter Outcome Survey (HOS): patient registry - DE
PatientRegistry of Hunter Outcome Survey (HOS): patient registry - DE
Czech national Diamond-Blackfan Anemia Registry
PatientRegistry of Czech national Diamond-Blackfan Anemia Registry
Spanish registry of pulmonary Langerhans cell histiocytosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
PatientRegistry of Spanish registry of pulmonary Langerhans cell histiocytosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
Myeloma and Related Diseases Registry (MRDR)
PatientRegistry of Myeloma and Related Diseases Registry (MRDR)
CERTAIN: Cooperative European Paediatric Renal Transplant Initiative registry
PatientRegistry of CERTAIN: Cooperative European Paediatric Renal Transplant Initiative registry
Fabry Disease Registry & Pregnancy Sub-registry - DE
PatientRegistry of Fabry Disease Registry & Pregnancy Sub-registry - DE
RaDiCo-COBBALT: National cohort on Bardet-Bield syndrome and Alstrï¿½m syndrome
PatientRegistry of RaDiCo-COBBALT: National cohort on Bardet-Bield syndrome and Alstr\u00F6m syndrome
Registry for Patients with Niemann-Pick Type C Disease
PatientRegistry of Registry for Patients with Niemann-Pick Type C Disease
Adrenocortical Carcinoma Registry - part of the ENSAT Registry (ENS@T)
PatientRegistry of Adrenocortical Carcinoma Registry - part of the ENSAT Registry (ENS@T)
PatientRegistry of Nordic Database for Rare Diseases
Motor Function Measure database (Neuromuscular Diseases)
PatientRegistry of Motor Function Measure database (Neuromuscular Diseases)
AGMT (Arbeitsgemeinschaft medikamentï¿½se Tumortherapie): Head and neck tumor registry Austria
PatientRegistry of AGMT (Arbeitsgemeinschaft medikament\u00F6se Tumortherapie): Head and neck tumor registry Austria
PatientRegistry of European Parathyroid Tumor Registry
RaDiCo-RETICO: National cohort on inherited retinal dystrophies
PatientRegistry of RaDiCo-RETICO: National cohort on inherited retinal dystrophies
ARegPKD - International Registry Study on Autosomal Recessive Polycystic Kidney Disease
PatientRegistry of ARegPKD - International Registry Study on Autosomal Recessive Polycystic Kidney Disease
Italian Registry of Kernicterus and hyperbilirubinemia (RIKI)
PatientRegistry of Italian Registry of Kernicterus and hyperbilirubinemia (RIKI)
Mykke : German registry for children and adolescents with myocarditis
PatientRegistry of Mykke : German registry for children and adolescents with myocarditis
UKPSSR : United Kingdom Primary Sjogren's Syndrome Registry
PatientRegistry of UKPSSR : United Kingdom Primary Sjogren's Syndrome Registry
RaDiCo-PID: National cohort on Idiopathic Interstitial Pneumonia from infancy to elderly
PatientRegistry of RaDiCo-PID: National cohort on Idiopathic Interstitial Pneumonia from infancy to elderly
SIERMA: Information system on rare diseases in Madrid (Spain)
PatientRegistry of SIERMA: Information system on rare diseases in Madrid (Spain)
EUROMAC: Registry of patients affected by McArdle Disease
PatientRegistry of EUROMAC: Registry of patients affected by McArdle Disease
PatientRegistry of Aplastic Anaemia Registry (AAR)
Turkish pediatric atypical hemolytic uremic syndrome registry
PatientRegistry of Turkish pediatric atypical hemolytic uremic syndrome registry
PatientRegistry of Swiss Childhood Cancer Registry
UKIVAS Registry : UK and Ireland Vasculitis registry
PatientRegistry of UKIVAS Registry : UK and Ireland Vasculitis registry
PatientRegistry of The Global aHUS Registry - UK
PatientRegistry of Global Angelman Syndrome Registry
PatientRegistry of Osteogenesis Imperfecta Registry - ROI
PatientRegistry of Rare Cancer Genetics Registry (RCGR)
Australian Bleeding Disorders Registry (ABDR)
PatientRegistry of Australian Bleeding Disorders Registry (ABDR)
Blue cone monochromatism - Patient registry
PatientRegistry of Blue cone monochromatism - Patient registry
PatientRegistry of Tuscan Registry of Congenital Anomalies
PanGen-FAM: Spanish registry of hereditary pancreatic cancer
PatientRegistry of PanGen-FAM: Spanish registry of hereditary pancreatic cancer
ERNEST - European Registry for Myeloproliferative Neoplasms towards a better understanding of Epidemiology, Survival and Treatment
PatientRegistry of ERNEST - European Registry for Myeloproliferative Neoplasms towards a better understanding of Epidemiology, Survival and Treatment
National Registry of Congenital Malformations (RNMC)
PatientRegistry of National Registry of Congenital Malformations (RNMC)
National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)
PatientRegistry of National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)
National Severe Immunodeficiency Registry - contributes to ESID registry
PatientRegistry of National Severe Immunodeficiency Registry - contributes to ESID registry
Sicilian Registry of Thalassemia and Hemoglobinopathies (Re.S.T.E.)
PatientRegistry of Sicilian Registry of Thalassemia and Hemoglobinopathies (Re.S.T.E.)
PatientRegistry of Beh\u00E7et's disease Italian registry
DUO registry: Registry for Patients with Digital Ulcers Associated with Systemic Sclerosis
PatientRegistry of DUO registry: Registry for Patients with Digital Ulcers Associated with Systemic Sclerosis
PatientRegistry of Thromboreductin-Registry
AGMT (Arbeitsgemeinschaft medikamentï¿½se Tumortherapie): PTCL registry (T-cell lymphoma in Austria)
PatientRegistry of AGMT (Arbeitsgemeinschaft medikament\u00F6se Tumortherapie): PTCL registry (T-cell lymphoma in Austria)
MCRN078 (E2080-E044-401): European Registry of Anti-Epileptic Drug Use in Patients with Lennox-Gastaut Syndrome - UK
PatientRegistry of MCRN078 (E2080-E044-401): European Registry of Anti-Epileptic Drug Use in Patients with Lennox-Gastaut Syndrome - UK
PatientRegistry of Croatian NMD Registry for Pediatrics
The national Polish pediatric IgAN registry
PatientRegistry of The national Polish pediatric IgAN registry
MALTA CONGENITAL ANOMALIES REGISTRY (MCAR) - it contributes to EUROCAT
PatientRegistry of MALTA CONGENITAL ANOMALIES REGISTRY (MCAR) - it contributes to EUROCAT
PHARMACHILD patient registry: Long-term pharmacovigilance for adverse effects in childhood arthritis, focusing on immune modulatory drugs (part of PRINTO network)
PatientRegistry of PHARMACHILD patient registry: Long-term pharmacovigilance for adverse effects in childhood arthritis, focusing on immune modulatory drugs (part of PRINTO network)
German Registry of Incidental Gallbladder Carcinoma (PERSUASION)- a Permanent Platform Including All Kind of Biliary Tract Cancers (BTC)
PatientRegistry of German Registry of Incidental Gallbladder Carcinoma (PERSUASION)- a Permanent Platform Including All Kind of Biliary Tract Cancers (BTC)
PatientRegistry of Glomerulonephritis Registry
TIRCON: NBIA (Neurodegeneration with Brain Iron Accumulation) patient registry
PatientRegistry of TIRCON: NBIA (Neurodegeneration with Brain Iron Accumulation) patient registry
UK facioscapulohumeral muscular dystrophy patient registry
PatientRegistry of UK facioscapulohumeral muscular dystrophy patient registry
National Registry of Congenital Anomalies of the Czech Republic
PatientRegistry of National Registry of Congenital Anomalies of the Czech Republic
Registry for C3 Glomerulopathy and Immune complex-mediated MPGN
PatientRegistry of Registry for C3 Glomerulopathy and Immune complex-mediated MPGN
French West Indies registry of congenital anomalies - contributes to the EUROCAT network
PatientRegistry of French West Indies registry of congenital anomalies - contributes to the EUROCAT network
RaDiCo-GenIDA: International social network for data collection on the natural history of rare monogenic forms of intellectual disabilities
PatientRegistry of RaDiCo-GenIDA: International social network for data collection on the natural history of rare monogenic forms of intellectual disabilities
EXCITING Registry: Registry for Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases
PatientRegistry of EXCITING Registry: Registry for Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases
HTA-THAL: The Italian multi-region thalassaemia registry
PatientRegistry of HTA-THAL: The Italian multi-region thalassaemia registry
PROGNOSIS : The Prospective German Non-CF-Bronchiectasis Registry - contributes to EMBARC registry
PatientRegistry of PROGNOSIS : The Prospective German Non-CF-Bronchiectasis Registry - contributes to EMBARC registry
Hellenic Neuromuscular Disorders Registry
PatientRegistry of Hellenic Neuromuscular Disorders Registry
COST Action BM1105 Patient Registry - GnRH Network
PatientRegistry of COST Action BM1105 Patient Registry - GnRH Network
RaDiCo-IDMet: National and European cohort on Imprinting Disorders and their metabolic consequences
PatientRegistry of RaDiCo-IDMet: National and European cohort on Imprinting Disorders and their metabolic consequences
GENEPSO: French BRCA1 and 2 carrier cohort study
PatientRegistry of GENEPSO: French BRCA1 and 2 carrier cohort study
RaDiCo-ECYSCO: European cystinosis cohort
PatientRegistry of RaDiCo-ECYSCO: European cystinosis cohort
PatientRegistry of Ceprotin Treatment Registry
The Italian Registry of Hereditary Angioedema
PatientRegistry of The Italian Registry of Hereditary Angioedema
Neonatal Alloimmune Thrombocytopenia (NAIT) Registry
PatientRegistry of Neonatal Alloimmune Thrombocytopenia (NAIT) Registry
REHem-AR-SEHOP: Spanish Registry of Hemoglobinopathies and Rare Anemias from the Spanish Society of Paediatric Haematology and Oncology
PatientRegistry of REHem-AR-SEHOP: Spanish Registry of Hemoglobinopathies and Rare Anemias from the Spanish Society of Paediatric Haematology and Oncology
French severe chronic neutropenia certified patient registry - contributes to the SCN international registry (SCNIR)
PatientRegistry of French severe chronic neutropenia certified patient registry - contributes to the SCN international registry (SCNIR)
REHIPED: Spanish Registry for Pediatric Pulmonary Hypertension
PatientRegistry of REHIPED: Spanish Registry for Pediatric Pulmonary Hypertension
Lymphoma and Related Diseases Registry (LaRDR)
PatientRegistry of Lymphoma and Related Diseases Registry (LaRDR)
The Orphanet catalogue of registries and biobanks
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).
Orphadata provides the scientific community with comprehensive, massive, re-usable and computable quality data sets related to rare diseases from the Orphanet knowledge base.
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)