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Funded by an IRDiRC member =

Registries and Biobanks

FRANCE

ILE-DE-FRANCE
PARIS

UMD DMD (Dystrophin) mutations database
CHU Paris Centre - Hôpital Cochin
Service de génétique et biologie moléculaires

FRANCE

OCCITANIE
MONTPELLIER

UMD DMD (Dystrophin) mutations database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire

ITALY

LIGURIA
GENOVA

Galliera Genetic Bank
Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche

ITALY

LOMBARDIA
MILANO

Funded by an IRDiRC memberBank of cells, tissues and DNA from patients with neuromuscular diseases (EuroBioBank partner)
Fondazione IRCCS Istituto Neurologico "C. Besta" - sede Bicocca
Laboratorio di Biologia della Cellula Muscolare

ITALY

LOMBARDIA
MILANO

RAM-NET: Italian registry of patients with neuromuscular diseases - contributes to Treat-NMD european network
Fondazione IRCCS Istituto Neurologico "Carlo Besta"
Clinica Neuropatie Degenerative Centrali e Periferiche

CZECH REPUBLIC

South Moravia
BRNO

FRANCE

ILE-DE-FRANCE
PARIS

Duchenne and Becker muscular dystrophy patient registry in France - part of the TREAT-NMD network
CHU Paris Centre - Hôpital Cochin
Service de génétique et biologie moléculaires

FRANCE

OCCITANIE
MONTPELLIER

Duchenne and Becker muscular dystrophy patient registry in France - part of the TREAT-NMD network
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

Nordrhein-Westfalen
MÜNSTER

Neuro-Heart-Registry: Registry for patients with heart involment in neurovascular diseases
Universitätsklinikum Münster
Arbeitsgruppe für Kardiovaskuläre Bildgebung

HUNGARY

Közép-Magyarország
BUDAPEST

DMD registry - Hungary - contributes to the TREAT-NMD network
National Institute of Environmental Health
Department of Molecular Genetics and Diagnostics

ITALY

LAZIO
ROMA

Duchenne and Becker muscular dystrophy and spinal muscular dystrophy patient registries in Italy - contributes to the TREAT-NMD network
Parent Project - ONLUS
Parent Project - Genitori contro la Distrofia Muscolare di Duchenne & Becker ONLUS

NETHERLANDS

Zuid-Holland
LEIDEN

NETHERLANDS

Zuid-Holland
LEIDEN

LOVD-LMD: DMD gene (Duchenne Muscular Dystrophy) variant database
LUMC - Leids Universitair Medisch Centrum
Leiden Genome Technology Center (LGTC) - Afdeling Humane Genetica

NETHERLANDS

Zuid-Holland
LEIDEN

LOVD-LMD: DMD d gene (Duchenne Muscular Dystrophy (whole exon changes)) variant database
LUMC - Leids Universitair Medisch Centrum
Leiden Genome Technology Center (LGTC) - Afdeling Humane Genetica

POLAND

Warszawa
WARSAW

Polish Registry of Patients with Neuromuscular Diseases contributes to the TREAT-NMD network
Warszawski Uniwersytet Medyczny - Medical University of Warsaw
Klinika Neurologii - Department of Neurology

PORTUGAL

NORTE
PORTO

Duchenne and Becker muscular dystrophy patient registry in Portugal - contributes to the TREAT-NMD network
CGMJM - Centro de Genética Médica Jacinto Magalhăes
Centro de Genética Médica Jacinto Magalhăes

SWITZERLAND

Suisse Alémanique
ZÜRICH

SWITZERLAND

Suisse Romande
LAUSANNE

TURKEY

TURKEY
ANKARA

Duchenne and Becker muscular dystrophy and spinal muscular dystrophy patient registries in Turkey - contributes to the TREAT-NMD network
Hacettepe University Faculty of Medicine
Department of physical therapy and rehabilitation

UNITED KINGDOM

Greater London
LONDON

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian Neuromuscular Disease Registry
Scientific Institute of Public Health WIV/ISP
Epidemiology - 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

ITALY

CAMPANIA
NAPOLI

Naples Human Mutation Gene Biobank
AOU Seconda Universitŕ degli Studi di Napoli - Centro storico
Servizio di Cardiomiologia e Genetica Medica

SPAIN

Cataluńa
BARCELONA

NMD-ES: Myopathies and Muscular Dystrophies Registry
Hospital de la Santa Creu i Sant Pau
Servicio de Neurología

UNITED KINGDOM

Greater London
LONDON

UK10K RARE NEUROMUSCULAR - Genetic neuromuscular diseases variant database
UCL Institute of Child Health, University College London
Dubowitz Neuromuscular Centre

AUSTRIA

TIROL
INNSBRUCK

Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Zentrum Medizinische Genetik Innsbruck

DENMARK

Sjćlland
COPENHAGEN

Mendelian cytogenetics network online database
The Panum Institute-University of Copenhagen
Department of Cellular and Molecular Medicine

ESTONIA

Tartu
TARTU

Biobank of the Estonian genome center
Tartu University Hospital
Centre of Genetics - United laboratories

ITALY

LIGURIA
GENOVA

Cell line and DNA Biobank from patients affected by genetic diseases
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Laboratorio di Diagnosi Pre-Postnatale Malattie Metaboliche

ITALY

LIGURIA
GENOVA

Funded by an IRDiRC memberTelethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Laboratorio di Diagnosi Pre-Postnatale Malattie Metaboliche

KOREA, REPUBLIC OF

KOREA, REPUBLIC OF
SEOUL

Funded by an IRDiRC memberKorean Mutation Database for Rare Diseases
Seoul National University Hospital
Molecular Diagnostics Laboratory

MOROCCO

Rabat
RABAT

Moroccan National Genetic Database
Institut National d'Hygične
Département de génétique médicale

SPAIN

Comunidad Valenciana
VALENCIA

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

SPAIN

País Vasco
BARAKALDO

Funded by an IRDiRC memberBasque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco

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

FRANCE

ILE-DE-FRANCE
GARCHES

French registry of neuromuscular diseases from reference centres
CHU Paris IdF Ouest - Hôpital Raymond Poincaré
Centre de Référence Maladies Neuromusculaires

FRANCE

ILE-DE-FRANCE
PARIS

French registry of neuromuscular diseases from reference centres
CHU Paris - Hôpital Necker-Enfants Malades
Consultation Myopathie

GERMANY

Nordrhein-Westfalen
AACHEN

Brain-net - brain tissue bank Aachen
Universitätsklinikum Aachen
Institut für Neuropathologie

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

SLOVENIA

SLOVENIA
LJUBLJANA

Human tissue biobank of Neuromuscular diseases (EuroBioBank partner)
University Medical Center Ljubljana
Institute of Anatomy

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

Networks of registries and biobanks

ITALY

LIGURIA
GENOVA

TELETHON NETWORK OF GENETIC BIOBANKS
  • IRCCS Istituto G. Gaslini - Ospedale Pediatrico
  • Laboratorio di Diagnosi Pre-Postnatale Malattie Metaboliche
  • SPAIN

    Cataluńa
    BARCELONA

    NMD-ES: Spanish Registry of Neuromuscular Diseases
  • Hospital de la Santa Creu i Sant Pau
  • Servicio de Neurología
  • UNITED KINGDOM

    Tyne & Wear
    NEWCASTLE UPON TYNE

    Funded by an IRDiRC memberTREAT-NMD: Accelerating Treatments for Neuromuscular Diseases (registries)
  • Newcastle upon Tyne Hospitals NHS Trust
  • Institute of Genetic Medicine
  • GERMANY

    Bayern
    MÜNCHEN

    Brain-Net Germany : National network of brain banks in Germany
  • Zentrum für Neuropathologie und Prionforschung (ZNP)
  • Zentrum für Neuropathologie und Prionforschung der LMU München