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Funded by an IRDiRC member =

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

GERMANY

Nordrhein-Westfalen
MÜNSTER

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

AUSTRIA

TIROL
INNSBRUCK

Austrian registry for inborn errors of metabolism
Medizinische Universität Innsbruck
Pädiatrie I

AUSTRIA

TIROL
INNSBRUCK

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

DENMARK

Sjælland
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

GERMANY

Baden-Württemberg
REUTLINGEN

RAMEDIS : Rare Metabolic Diseases Database
Klinikum am Steinenberg
Klinik für Kinder- und Jugendmedizin

GERMANY

Baden-Württemberg
REUTLINGEN

RAMEDIS : Rare Metabolic Diseases mutation Database
Klinikum am Steinenberg
Klinik für Kinder- und Jugendmedizin

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'Hygiène
Département de génétique médicale

NETHERLANDS

Noord-Holland
AMSTERDAM

Biobank Inherited Metabolic Disorders (blood/urine/liquor/fibroblasts)
AMC - Academisch Medisch Centrum
Afdeling Endocrinologie en Metabolisme

NETHERLANDS

Utrecht
UTRECHT

DDRMD - Dutch Diagnosis Registration Metabolic Diseases
UMC Utrecht - Universitair Medisch Centrum Utrecht
Afdeling Metabole Ziekten

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

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

UNITED KINGDOM

Greater London
LONDON

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

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

    Cataluña
    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