List of existing registries in ERDRI

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Action - check their common data elements :

• [ ] Name of the registry | Description | Medical area | Country | Website |   |   |   |  

• [ ] Banque Nationale de Données Maladies Rares | The French National Registry for Rare Diseases is a national tool for epidemiology and public health purposes in the fie... | Rare diseases | France | http://www.bndmr.fr/ |   |   |  

• [ ] EpiCARE | Redcap Registry is aimed to locate patients with Rare and complex epilepsies across 28 EpiCARE Centres | Epilepsy and Rare Disease | United Kingdom of Great Britain and Northern Ireland | https://redcap.slms.ucl.ac.uk/surveys/?s=7X499N9WKP

• [ ] ESID | Patients with Primary Immunodeficiencies (PID, also referred to as Inborn Errors of Immunity, IEI) | Primary Immunodeficiencies | Germany | https://esid.org/Working-Parties/Registry-Working-Party/ESID-Registry

• [ ] EuroBloodNet Registry | Registry developed for ERN-EuroBloodNet aiming to monitor members' activity in terms of number of patients and engage cl... | Rare Haematological Disorders | Spain |   |   |   |   |  

• [ ] EUROCAT Central Registry | The Central Registry of EUROCAT collects 96 variables from the member registries. At local level the registries can coll... | Congenital Anomalies | Italy |   |   |   |   |  

• [ ] Eurocat Northern Netherlands | Eurocat Northern Netherlands is a population-based congenital anomaly registrry covering the northern provinces of the... | congenital anomalies | Netherlands | https://www.umcg.nl/NL/UMCG/niet_medisch/eurocat-nederland/Paginas/default.aspx

• [ ] European Rare Kidney Disease Registry | In ERK-Reg members and partners of the European Rare Kidney Disease Registry (ERKNet) collect information from patients... | Nephrology | Germany | https://registry.erknet.org |   |  

• [ ] European Rare Vascular Anomalies Registry | The VASCA registry is the registry for Rare Vascular Anomalies, in the scope of VASCERN. It is conceptualized as a worki... | Dermatology, (interventional) Radiology, Plastic Surgery, Vascular Surgery, Pediatrics, Pediatric Surgery, Oral Jaw Surg... | Netherlands | https://www.vascern.eu/expertise/rare-diseases-wgs/vasca-wg/

• [ ] European registry for congenital hyperinsulinsm | Congenital hyperinsulinism (CHI) is a devastating medical condition characterised by marked clinical, histological and g... | endocrinology | Germany | http://www.mkse.ovgu.de/en/ |   |  

• [ ] European Registry for Rare Endocrine Conditions | To register core data of rare endocrine conditions covered by Endo-ERN | Endocrinology | United Kingdom of Great Britain and Northern Ireland | https://www.mvls.gla.ac.uk/EuRRECa/ |  

• [ ] French Pulmonary Hypertension Registry | Prospective registry of consecutive patients with different forms of pulmonary hypertension followed in the centers belo... | Respiratory and cardiovascular diseases | France | https://registre-htap.aphp.fr/ |   |  

• [ ] iNTD („International Network on Neurotransmitter related Disorders“) Registry | This register enables detailed analysis of the natural courses of the disease, the diagnostic approaches and the current... | Neurotransmitter related disorders | Germany | https://intd-registry.org/ |   |   |  

• [ ] JRC Central Authority | JRC Rare Disease team, not belonging to any actual Rare Disease network. | None (administrative registry) | Italy | https://eu-rd-platform.jrc.ec.europa.eu |  

• [ ] National Congenital Anomaly and Rare Disease Registration Service | The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) records those people with congenital abn... | Congenital anomalies and rare diseases | United Kingdom of Great Britain and Northern Ireland | https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-nc...

• [ ] Paediatric Transplantation European Registry | Paediatric Transplantation European Registry | Solid organ and hematopoietic stem cell paediatric transplantation | Spain | http://idipaz.org/ |   |   |  

• [ ] PCD Registry | Primary Ciliary Dyskinesia (PCD) is a rare disorder of mucociliary clearance caused by defective hair like organelles (c... | Pulmonology | Germany | https://www.pcdregistry.eu/ |   |  

• [ ] Pharmachild | Pharmacovigilance in Juvenile Idiopathic Arthritis patients (pharmachild) treated with biologic agents and/or methotrexa... | rheumatology | Italy |   |   |   |   |  

• [ ] R-LIVER | R-LIVER is a multi-center prospective patient registry. As part of the ERN-RARE-LIVER R-LIVER focusses on the rare liver... | Hepatology | Germany | https://www.rare-liver.eu/index.php |   |  

• [ ] Rare Anaemia Disorders European Epidemiological Platform | RADeep is a joint venture conceived in the core of ERN-EuroBloodNet, the European reference network for rare haematolog... | Rare Anaemia Disorders | Spain |   |   |   |   |  

• [ ] Registry of Ehlers-Danlos Syndrome – Registro della Sindrome di Ehlers-Danlos | The RED aims to register clinical, genetic and genealogical data of patients affected by Ehlers-Danlos Syndrome (EDS). D... | Orthopaedics - Rare Diseases | Italy |   |   |   |   |  

• [ ] Registry of Multiple Osteochondromas – Registro delle Esostosi Multiple | The REM aims to register clinical, genetic and genealogical data of patients affected by Multiple Osteochondromas (MO).... | Orthopaedics - Rare Diseases | Italy |   |   |   |   |  

• [ ] Registry of Ollier Disease and Maffucci Syndrome – Registro della Malattia di Ollier e della Sindrome di Maffucci | The ROM aims to register clinical, genetic and genealogical data of patients affected by Ollier Disease and Maffucci Syn... | Orthopaedics - Rare Diseases | Italy |   |   |   |   |  

• [ ] Registry of Osteogenesis Imperfecta – Registro dell’Osteogenesi Imperfetta | The ROI aims to register clinical, genetic and genealogical data of patients affected by Osteogenesis Imperfecta (OI). D... | Orthopaedics - Rare Diseases | Italy |   |   |   |   |  

• [ ] Rett Networked Database | Collect standardized clinical and genetic information about patients affected by Rett spectrum disorders, irrespective o... | Genetics of Neurodevelopmental disorders | Italy | http://www.rettdatabasenetwork.org/Homepage.asp

• [ ] SMArtCARE | SMArtCARE is a disease specific registry for all patients with spinal muscular atrophy (caused by SMN1 mutations) and co... | Spinal Muscular Atrophy | Germany | https://www.smartcare.de |   |  

• [ ] Spanish Rare Diseases Research Patient Registry | Patient Rare Diseases registries aimed to health outcomes and natural history of diseases | All rare diseases are included | Spain | https://registroraras.isciii.es/ |   |  

• [ ] The PRES European Network of Registries for Autoinflammatory Diseases in Childhood (Eurofever) | International registry collecting information on the clinical presentation, outcome and response to treatment of patient... | Autoinflammatory diseases | Italy | https://www.printo.it/eurofever/ |   |  

• [ ] Ukrainian SMA Registry | On-line patient registry for spinal muscular atrophy in Ukraine | neurology | Ukraine | https://registry.csma.org.ua/ |   |  

• [ ] UMD Netherlands | The Dutch Diagnosis Registration Metabolic Diseases (DDRMD) is a collaborative project of all clinical metabolic centers... | Metabolic Disease | Netherlands | https://www.ddrmd.nl/ |   |   |  

• [ ] Unified European Registry for Inherited Metabolic Disorders | U-IMD is a web-based European and international patient registry, encompassing all inherited metabolic diseases, relying... | Inherited Metabolic Diseases | Germany | https://www.u-imd-registry.org |   |  

• [ ] Vasculitis Ireland Network registry | Created in 2012, the VINE registry covers the whole of Ireland and recruits patients with systemic vasculitis. The longi... | Nephrology/Rheumatology | Ireland | https://www.tcd.ie/medicine/thkc/research/rare.php

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All registry been added to the class of EJPCatalogOfRegistries