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49 Result(s)
Funded by an IRDiRC member = 
Member of a ERN = 
Registries and Biobanks
GERMANY
Bayern
MÜNCHEN
MD-NET: Muscle Tissue Culture Collection (MTCC) (EuroBioBank partner)
Friedrich-Baur-Institut
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik
CANADA
Québec
MONTRÉAL
Canadian Inflammatory Myopathy Study (CIMS)
Hôpital général juif - Jewish General Hospital
Rheumatology Department, Suite A 725
CANADA
Québec
MONTRÉAL
Canadian Inflammatory Myopathy Study (CIMS)
Montreal Neurological Institute and Hospital
Clinical Research Unit (CRU)
FRANCE
ILE-DE-FRANCE
PARIS
French auto-immunity and Rituximab (AIR) registry: prospective study of patients treated with Rituximab
CHU Paris Centre - Hôpital Cochin, Site Cochin
Unité fonctionnelle de Médecine interne et centre de référence maladies rares
NETHERLANDS
Noord-Holland
AMSTERDAM
Biobank Inflammatory Neuromuscular Diseases (serum/peripheral bood cells/RNA/tissue/CSF)
Amsterdam UMC, locatie AMC
Afdeling Neurologie
SPAIN
Madrid
MADRID
MYO-SPAIN Platform: Patient registry on idiopathic inflammatory myopathy in Spain
Sociedad Española de Reumatología
UNITED KINGDOM
Greater Manchester
SALFORD
EuroMyositis registry
Hope Hospital, University of Manchester
The University of Manchester Rheumatic Diseases Centre
ITALY
TOSCANA
PISA
ERN [ReCONNET] - TogethERN ReCONNET: a European Registry Infrastructure for data harmonization in rare and complex connective tissue and musculoskeletal diseases
Azienda Ospedaliero Universitaria Pisana - Ospedale S. Chiara
ERN ReCONNET coordinating center
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
Belgian Neuromuscular Diseases Registry (BNMDR)
Sciensano
Health Services Research - Rare Diseases
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
Sciensano
Health Services Research - Rare Diseases
CANADA
Alberta
CALGARY
Canadian Neuromuscular Disease Registry - part of the TREAT-NMD network
University of Calgary Health Science Centre
Department of Clinical Neurosciences
CYPRUS
Cyprus
NICOSIA
NMDcy: Cypriot Neuromuscular Diseases - contributes to TREAT-NMD
Institute of Medical Rehabilitation
FRANCE
ILE-DE-FRANCE
EVRY
Human DNA and cell biobank of Genethon - genetic diseases, mainly neuromuscular diseases - part of the EuroBioBank network
Généthon
Centre de Recherche Généthon
FRANCE
ILE-DE-FRANCE
GARCHES
French registry of neuromuscular diseases from reference centres
CHU Paris IdF Ouest - Hôpital Raymond Poincaré
Unité : Consultation Maladies Neuro Musculaires
FRANCE
ILE-DE-FRANCE
PARIS
French National Registry for Rare Diseases (BNDMR)
AP-HP Campus Picpus - Département WIND (Web Innovation Données)
Banque Nationale de Données Maladies Rares (BNDMR)
FRANCE
ILE-DE-FRANCE
PARIS
ERN [EURO-NMD] - EURO-NMD Registry: Patient centered and interoperable registry hub for Rare Neuromuscular Diseases
Institut de Myologie - Hôpital Pitié-Salpêtrière
Unité clinique de pathologie neuromusculaire
GERMANY
Baden-Württemberg
HEIDELBERG
CERTAIN: Cooperative European Paediatric Renal Transplant Initiative registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg
GERMANY
Baden-Württemberg
HEIDELBERG
ERN [ERKNet] - ERKReg: The European Rare Kidney Disease Registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg
GERMANY
Berlin
BERLIN
Core documentation of children and adolescens with rheumatic diseases
Deutsches Rheuma-Forschungszentrum Berlin
Forschungsbereich Epidemiologie
GERMANY
Nordrhein-Westfalen
AACHEN
Brain-net - brain tissue bank Aachen
Universitätsklinikum Aachen
Institut für Neuropathologie
ITALY
LIGURIA
GENOVA
ERN [RITA] - MERITA: A METADATA REGISTRY FOR THE ERN RITA
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O. Pediatria II
ITALY
VENETO
PADOVA
Regional registry for neuromuscular disorders
Azienda Ospedaliera Universitaria di Padova - Campus Biomedico Pietro d'Abano
Neuromuscular Laboratory
ITALY
VENETO
PADOVA
Neuromuscular Tissue Bank (NMTB) (EuroBioBank partner)
Azienda Ospedaliera Universitaria di Padova - Campus Biomedico Pietro d'Abano
Neuromuscular Laboratory
NETHERLANDS
Gelderland
NIJMEGEN
Dutch Neuromuscular Database CRAMP: Computer Registry of All Myopathies and Polyneuropathies
Radboudumc - Radboud universitair medisch centrum
Afdeling Neurologie
NETHERLANDS
Noord-Holland
AMSTERDAM
ESPN/ERA-EDTA Registry: European Registry for Children on Renal Replacement Therapy
Amsterdam UMC, locatie AMC
Afdeling Klinische Informatiekunde
SLOVENIA
SLOVENIA
LJUBLJANA
Human tissue biobank of Neuromuscular diseases (EuroBioBank partner)
University Medical Center Ljubljana
Institute of Anatomy
SPAIN
Andalucía
SEVILLA
Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Dirección General de Calidad, Investigación y Gestión del Conocimiento
SPAIN
Aragón
ZARAGOZA
Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad, Bienestar Social y Familia
Servicio de Evaluación y Acreditación Sanitaria
SPAIN
Baleares
PALMA DE MALLORCA
Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Servicio de Epidemiología
SPAIN
Baleares
PALMA DE MALLORCA
Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Dirección General de Salud Pública y Consumo
SPAIN
Cantabria
SANTANDER
Population registry of rare diseases and congenital anomalies of Cantabria (Spain)
Gobierno de Cantabria. Consejería de Sanidad y Servicios Sociales
Servicio de Atención Sanitaria
SPAIN
Cataluña
BARCELONA
NMD-ES: Spanish Registry of Neuromuscular Diseases
Hospital de la Santa Creu i Sant Pau
Servicio de Neurología
SPAIN
Cataluña
ESPLUGUES DE LLOBREGAT
Biobank of the Sant Joan de Déu Children's Hospital for Research (BHISJDI)
Fundació Sant Joan de Déu - Institut de Recerca Sant Joan de Déu
Biobanco del Hospital Infantil Sant Joan de Déu para la investigación
SPAIN
Comunidad Valenciana
VALENCIA
SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras
SPAIN
Extremadura
MÉRIDA
Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeño de Salud
Subdirector de Epidemiología
SPAIN
Galicia
SANTIAGO DE COMPOSTELA
RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Análisis y Evaluación Asistencial
SPAIN
Madrid
MADRID
SIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Subdirección de Promoción y Prevención de la Salud
Subdirección de Promoción y Prevención de la Salud
SPAIN
Madrid
MADRID
ReeR: Spanish National Registry of Rare Diseases
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
SPAIN
Murcia
MURCIA
SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
Región de Murcia. Consejería de Sanidad y Política Social
Servicio de Planificación y Financiación Sanitaria
SPAIN
Navarra
PAMPLONA
Population registry of rare diseases of Navarra (Spain)
Instituto de Salud Pública y Laboral de Navarra
Sección de Epidemiología de Enfermedades No Transmisibles
SWITZERLAND
Suisse Alémanique
BERN
Swiss Rare Disease Registry
Institute of Social and Preventive Medicine (ISPM)
SWITZERLAND
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
UNITED KINGDOM
West Midlands
BIRMINGHAM
UK Renal Rare Disease Registry (RaDaR) - Part of OXAL Europe
Birmingham Children's Hospital NHS Foundation Trust
Birmingham Children's Hospital
GERMANY
Niedersachsen
GÖTTINGEN
ESNEK - Rare paediatric neurological disease registry Germany
Universitätsmedizin Göttingen
Geschäftsstelle der ESNEK
GERMANY
Nordrhein-Westfalen
MÜNSTER
Brain-Net - brain tissue bank Munster (pediatric neuropathology)
Institut für Neuropathologie der Medizinischen Fakultät Münster
Institut für Neuropathologie
SPAIN
Madrid
MADRID
ERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil
Networks of registries and biobanks
UNITED KINGDOM
Tyne & Wear
NEWCASTLE UPON TYNE
TREAT-NMD: Accelerating Treatments for Neuromuscular Diseases (registries)
Newcastle upon Tyne Hospitals NHS Trust
John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine
GERMANY
Bayern
MÜNCHEN