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Registries and Biobanks
BULGARIA
South-West region
SOFIA
Bulgarian Patient registry for neuromuscular diseases
University Hospital Alexandrovska
Clinic of neurology
CROATIA
CROATIA
ZAGREB
Croatian NMD Registry for Pediatrics
University Hospital Centre Zagreb
Department of Child Neurology
CZECH REPUBLIC
South Moravia
BRNO
REaDY Registry: Registry of muscular dystrophies
University hospital Brno
Institute of Biostatistics and Analyses
DENMARK
Jylland
ARHUS C
Danish registry for neuromuscular diseases
National Danish Rehabilitation Centre for Neuromuscular Diseases
FRANCE
ILE-DE-FRANCE
PARIS
Dystrophinopathy Registry
AP-HP.Centre - Université de Paris - Hôpital Cochin
Service de Médecine Génomique des Maladies de Système et d'Organe
FRANCE
ILE-DE-FRANCE
PARIS
Dystrophinopathy Registry
Hôpital Necker-Enfants Malades
Service de Neurologie pédiatrique
FRANCE
OCCITANIE
MONTPELLIER
Dystrophinopathy Registry
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire
GERMANY
Bayern
MÜNCHEN
MD-NET: Muscle Tissue Culture Collection (MTCC) (EuroBioBank partner)
Friedrich-Baur-Institut
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik
GERMANY
Bayern
MÜNCHEN
German DMD- and SMA-patient registry : Duchenne and Becker muscular dystrophy and spinal muscular atrophy patient registries in Austria and Germany
Friedrich-Baur-Institut
TREAT-NMD-Patientenregister
HUNGARY
Közép-Magyarország
BUDAPEST
The Hungarian patient registries for Duchenne Muscular Dystrophy
National Institute of Environmental Health
Department of Molecular Genetics and Diagnostics
NETHERLANDS
Zuid-Holland
LEIDEN
Duchenne and Becker muscular dystrophy patient registry in the Netherlands
LUMC - Leids Universitair Medisch Centrum
Afdeling Neurologie
POLAND
Warszawa
WARSAW
Polish Registry of Patients with Neuromuscular Diseases
Warszawski Uniwersytet Medyczny - Medical University of Warsaw
Klinika Neurologii - Department of Neurology
SWITZERLAND
Suisse Alémanique
BASEL
Swiss Registry for Neuromuscular Disorders
Universitäts-Kinderspital beider Basel UKBB
Die Abteilung für Neuro- und Entwicklungspädiatrie
SWITZERLAND
Suisse Alémanique
BERN
Swiss Registry for Neuromuscular Disorders
Institute of Social and Preventive Medicine (ISPM)
TURKEY
TURKEY
ANKARA
Turkish NMD Registry - KUKAS
Hacettepe University Faculty of Medicine
Department of physical therapy and rehabilitation
AUSTRALIA
Victoria
PARKVILLE
Australian Neuromuscular Disease Registry (ANMDR)
Murdoch Children's Research Institute
Australian Neuromuscular Disease Registry
FRANCE
ILE-DE-FRANCE
PARIS
UMD DMD (Dystrophin) mutations database
AP-HP.Centre - Université de Paris - Hôpital Cochin
Service de Médecine Génomique des Maladies de Système et d'Organe
FRANCE
ILE-DE-FRANCE
PARIS
Motor Function Measure database (Neuromuscular Diseases)
Institut de Myologie - Hôpital Pitié-Salpêtrière
Unité clinique de pathologie neuromusculaire
FRANCE
OCCITANIE
MONTPELLIER
UMD DMD (Dystrophin) mutations database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire
ITALY
CAMPANIA
NAPOLI
Bank for the Diagnosis and Research on neuromuscular Disorders (NHMGB) (EuroBioBank partner)
AOU Università degli Studi della Campania "Luigi Vanvitelli" - Centro storico
Servizio di Cardiomiologia e Genetica Medica
ITALY
LIGURIA
GENOVA
Galliera Genetic Bank
Ente Ospedaliero Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche
ITALY
LOMBARDIA
MILANO
DNA cell lines and nerve muscle cardiac tissues bank (EuroBioBank partner)
Fondazione IRCCS Ca' Granda - Ospedale Maggiore Policlinico
U.O. Malattie Neuromuscolari
ITALY
LOMBARDIA
MILANO
Movement Disorders Biobank (EuroBioBank partner)
Fondazione IRCCS Istituto Neurologico "C. Besta" - sede Bicocca
S.S. Genetica dei Disturbi del Movimento e Disordini del Metabolismo Energetico
ITALY
LOMBARDIA
MILANO
Neuromuscular Disease Biobank
Fondazione IRCCS Istituto Neurologico "Carlo Besta"
U.O. Neurologia IV - Malattie Neuromuscolari e Neuroimmunologia
ITALY
LOMBARDIA
MILANO
RAM-NET: Italian registry of patients with neuromuscular diseases
Fondazione IRCCS Istituto Neurologico "Carlo Besta"
Clinica Neuropatie Degenerative Centrali e Periferiche
SPAIN
Cataluña
BARCELONA
Spanish registry of Duchenne muscular dystrophy
Hospital de la Santa Creu i Sant Pau
Servicio de Genética
SPAIN
Comunidad Valenciana
VALENCIA
Spanish registry of Duchenne muscular dystrophy
IIS La Fe - Instituto de Investigación Sanitaria La Fe
Grupo de investigación en biomedicina molecular, celular y genómica
UNITED KINGDOM
Greater London
LONDON
North Star database : National database for Duchenne muscular dystrophy
GOSH NHS Foundatin Trust
Dubowitz Neuromuscular Centre
ITALY
CAMPANIA
NAPOLI
Naples Human Mutation Gene Biobank
AOU Università degli Studi della Campania "Luigi Vanvitelli" - Centro storico
Servizio di Cardiomiologia e Genetica Medica
ITALY
LAZIO
ROMA
RNMR: Italian National Rare Diseases Registry
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare
ITALY
TOSCANA
PISA
Tuscan Registry of Rare Diseases
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Fondazione Toscana Gabriele Monasterio
ITALY
VENETO
PADOVA
Rare Diseases Registry - Veneto Region
Azienda Ospedaliera di Padova
Coordinamento Malattie Rare Regione del Veneto
SPAIN
Andalucía
SEVILLA
Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Subdirección Técnica Asesora de Gestión de la Información
SPAIN
Aragón
ZARAGOZA
Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad
Servicio de Evaluación y Acreditación Sanitaria
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
Comunidad Valenciana
VALENCIA
SIER-CV: Information System on rare diseases in Valencian Community (Spain)
Generalitat Valenciana. Conselleria de Sanitat Universal i Salut Pública
Servicio de Estudios Epidemiológicos y Vigilancia de Enfermedades No Transmisibles
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 Atención Hospitalaria
SPAIN
Madrid
MADRID
ERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil
SPAIN
Madrid
MADRID
RePER: Rare Diseases Patient Registry
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
RERNA: Population-based Rare Disease Registry of Navarre (Spain)
Instituto de Salud Pública y Laboral de Navarra
Observatorio de la Salud Comunitaria
SPAIN
País Vasco
BARAKALDO
Basque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco
SPAIN
País Vasco
VITORIA-GASTEIZ
Rare Diseases Registry of the Basque Country
Gobierno Vasco. Departamento de Salud
Registro de Enfermedades Raras de la Comunidad Autónoma de Euskadi
UNITED STATES
South Dakota
SIOUX FALLS
CORDS Registry: Coordination of Rare Diseases at Sanford Registry
Sanford Research
Standford Research
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
BNMDR: Belgian Neuromuscular Diseases Registry
Sciensano
Health Services Research - Rare Diseases
HUNGARY
Közép-Magyarország
BUDAPEST
DNA biobank of the Department of Molecular Genetics and Diagnostics, National Institute of Environmental Health (NIEH) (EuroBioBank partner)
National Institute of Environmental Health
Department of Molecular Genetics and Diagnostics
UNITED KINGDOM
Greater London
LONDON
UK10K RARE NEUROMUSCULAR - Genetic neuromuscular diseases variant database
GOSH NHS Foundatin Trust
Dubowitz Neuromuscular Centre
CANADA
Alberta
CALGARY
Canadian Neuromuscular Disease Registry
University of Calgary Health Science Centre
Department of Clinical Neurosciences
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
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
ITALY
VENETO
PADOVA
Neuromuscular Tissue Bank (NMTB)
Azienda Ospedaliera Universitaria di Padova - Campus Biomedico Pietro d'Abano
Neuromuscular Laboratory
ITALY
VENETO
PADOVA
Neuromuscular Tissue Bank (NMTB)
Azienda Ospedaliera di Padova
Clinica Neurologica
SLOVENIA
SLOVENIA
LJUBLJANA
Human tissue biobank of Neuromuscular diseases (EuroBioBank partner)
University Medical Center Ljubljana
Institute of Anatomy
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
Pediatric Biobank for Research
Fundació Sant Joan de Déu - Institut de Recerca Sant Joan de Déu
Biobanco Pediátrico para la Investigación
AUSTRIA
TIROL
INNSBRUCK
Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Zentrum Medizinische Genetik Innsbruck
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
CRRD: Central Registry of Rare Diseases
Sciensano
Health Services Research - Rare Diseases
ESTONIA
Tartu
TARTU
Biobank of the Estonian Genome Centre
Institute of Genomics of University of Tartu
The Estonian Genome Centre
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)
GERMANY
Niedersachsen
GÖTTINGEN
ESNEK - Rare paediatric neurological disease registry Germany
Universitätsmedizin Göttingen
Geschäftsstelle der ESNEK
ITALY
LIGURIA
GENOVA
Telethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche
ITALY
LIGURIA
GENOVA
Genetic Biobank of the Human Genetics Laboratory (BGU-IGG)
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O.C. Laboratorio di Genetica Umana
KOREA, REPUBLIC OF
KOREA, REPUBLIC OF
SEOUL
Korean Mutation Database for Rare Diseases
Seoul National University Hospital
Molecular Diagnostics Laboratory
MOROCCO
Rabat
RABAT
Moroccan National Genetic Database
Institut National d'Hygiène
Département de génétique médicale
NORWAY
Østlandet
OSLO
Norwegian registry on rare disorders
Oslo University Hospital, Ullevaal
Norsk register for sjeldne diagnoser
SPAIN
Comunidad Valenciana
VALENCIA
CIBERER Biobank (Biobank of rare diseases)
IIS La Fe - Instituto de Investigación Sanitaria La Fe
Grupo de investigación en biomedicina molecular, celular y genómica
SPAIN
Comunidad Valenciana
VALENCIA
CIBERER Biobank (Biobank of rare diseases)
INCLIVA - Facultad de Medicina de la Universidad de Valencia
Grupo de investigación en fisiopatología celular y orgánica del estrés oxidativo
SPAIN
Madrid
MADRID
BioNER: Biobank of the Institute of Rare Diseases Research/Institute of Health Carlos III
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
SWITZERLAND
Suisse Alémanique
BERN
Swiss Rare Disease Registry (SRSK)
Institute of Social and Preventive Medicine (ISPM)
SWITZERLAND
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry (SRSK)
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
UNITED KINGDOM
Cambridgeshire
CAMBRIDGE
National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)
Public Health England (PHE)
NCARDRS
Networks of registries and biobanks
MALTA
MALTA
MALTA