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Registers en biobanken

IERLAND

County Dublin
DUBLIN

Irish registry of amyotrophic lateral sclerosis and motor neurone disease - contributes to Euro-MOTOR
Trinity College Dublin
Department of Neurology - Trinity Biomedical Sciences Institute

BELGIË

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian Neuromuscular Diseases Registry (BNMDR)
Sciensano
Health Services Research - Rare Diseases

CANADA

Alberta
CALGARY

Canadian Neuromuscular Disease Registry
University of Calgary Health Science Centre
Department of Clinical Neurosciences

CYPRUS

Cyprus
NICOSIA

DUITSLAND

Baden-Württemberg
ULM

ALS registry swabia
Universitäts- und Rehabilitationskliniken Ulm (RKU)
Klinik für Neurologie

DUITSLAND

Bayern
WÜRZBURG

Brain-Net - brain tissue bank Würzburg (Amyotrophic lateral sclerosis)
Institut für Pathologie der Universität Würzburg
Institut für Pathologie

DUITSLAND

Nordrhein-Westfalen
AACHEN

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

DUITSLAND

Nordrhein-Westfalen
BOCHUM

ALS registry Nordrhein-Westfalen
Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil GmbH
ALS Register Nordrhein-Westfalen

DUITSLAND

Rheinland-Pfalz
LUDWIGSHAFEN

ALS registry Rheinland-Pfalz
Klinikum der Stadt Ludwigshafen gGmbH
Rheinland-Pfälzisches ALS-Register

FRANKRIJK

ILE-DE-FRANCE
GARCHES

French registry of neuromuscular diseases from reference centres
CHU Paris IdF Ouest - Hôpital Raymond Poincaré
Unité : Consultation Maladies Neuro Musculaires

FRANKRIJK

NOUVELLE AQUITAINE
LIMOGES

French Register of Amyotrophic Lateral Sclerosis
Faculté de médecine de Limoges
NeuroEpidémiologie Tropicale

GRIEKENLAND

ATTIKI
ATHENS

PATIENT REGISTRY AND DNA BIOBANK ON NEUROGENETIC DISORDERS
University of Athens - Medical school
Neurogenetics Unit

ITALIË

CAMPANIA
NAPOLI

Bank for the Diagnosis and Research on neuromuscular Disorders (NHMGB) (EuroBioBank partner)
AOU Seconda Universitŕ degli Studi di Napoli - Centro storico
Servizio di Cardiomiologia e Genetica Medica

ITALIË

LOMBARDIA
MILANO

DNA cell lines and nerve muscle cardiac tissues bank (EuroBioBank partner)
Fondazione IRCCS Ca' Granda - Ospedale Maggiore Policlinico
U.O. Malattie Neuromuscolari

ITALIË

LOMBARDIA
MILANO

Movement Disorders Biobank (EuroBioBank partner)
Fondazione IRCCS Istituto Neurologico "C. Besta" - sede Bicocca
U.O. di Neurogenetica Molecolare

ITALIË

VENETO
PADOVA

Gefinancierd door een IRDiRC-lidRegional registry for neuromuscular disorders
Azienda Ospedaliera Universitaria di Padova - Campus Biomedico Pietro d'Abano
Neuromuscular Laboratory

ITALIË

VENETO
PADOVA

Neuromuscular Tissue Bank (NMTB) (EuroBioBank partner)
Azienda Ospedaliera Universitaria di Padova - Campus Biomedico Pietro d'Abano
Neuromuscular Laboratory

NEDERLAND

Gelderland
NIJMEGEN

Nederlandse Neuromusculaire Database CRAMP: Computer Registry of All Myopathies and Polyneuropathies
Radboudumc - Radboud universitair medisch centrum
Afdeling Neurologie

NEDERLAND

Utrecht
UTRECHT

ALS database
UMC Utrecht - Universitair Medisch Centrum Utrecht
Afdeling Neurologie

SLOVENIË

SLOVENIA
LJUBLJANA

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

SPANJE

Castilla - León
SALAMANCA

National DNA Bank: Rare diseases sample collection
Centro de Investigación del Cáncer (USAL-CSIC)
Banco Nacional de ADN

SPANJE

Cataluńa
BARCELONA

NMD-ES: Amyotrophic Lateral Sclerosis Registry
Hospital de la Santa Creu i Sant Pau
Servicio de Neurología

SPANJE

Cataluńa
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

BELGIË

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Central Registry of Rare Diseases (CRRD)
Sciensano
Health Services Research - Rare Diseases

DUITSLAND

Niedersachsen
GÖTTINGEN

ESNEK - Rare paediatric neurological disease registry Germany
Universitätsmedizin Göttingen
Geschäftsstelle der ESNEK

DUITSLAND

Nordrhein-Westfalen
MÜNSTER

Brain-Net - brain tissue bank Munster (pediatric neuropathology)
Institut für Neuropathologie der Medizinischen Fakultät Münster
Institut für Neuropathologie

FINLAND

Finland
TURKU

FRANKRIJK

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)

FRANKRIJK

ILE-DE-FRANCE
PARIS

Motor Function Measure database (Neuromuscular Diseases)
Institut de Myologie - Hôpital Pitié-Salpętričre
Unité clinique de pathologie neuromusculaire

FRANKRIJK

NORMANDIE
ROUEN

UMD-SMN1 France
CHU de Rouen
Laboratoire de génétique moléculaire

HONGARIJE

Közép-Magyarország
BUDAPEST

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

ITALIË

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

ITALIË

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

KROATIË

CROATIA
ZAGREB

Registry for neuromuscular disease
University Hospital Centre Zagreb
Department of Child Neurology

OEKRAĎNE

UKRAINE
KHARKIV

Spinal muscular atrophy patient registry in Ukraine - part of the TREAT-NMD network
Academy of medical science of Ukraine
Institute of Neurology, Psychiatry and Narcology

POLEN

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

SPANJE

Cataluńa
BARCELONA

Spanish patient registry for spinal muscular atrophy - part of the TREAT-NMD network
Hospital Universitari Vall d'Hebron
Laboratorio de Genética

TSJECHIË

South Moravia
BRNO

Spinal muscular atrophy patient registry in the Czech Republic - part of the TREAT-NMD network
University hospital Brno
Institute of Biostatistics and Analyses

TURKIJE

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

VERENIGD KONINKRIJK

Tyne & Wear
NEWCASTLE UPON TYNE

UK and Ireland Spinal muscular atrophy (SMA) patient registry (part of the TREAT-NMD network)
Newcastle upon Tyne Hospitals NHS Trust
John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine

ZWITSERLAND

Suisse Alémanique
BASEL

Swiss Registry for Neuromuscular Disorders
Universitäts-Kinderspital beider Basel UKBB
Die Abteilung für Neuro- und Entwicklungspädiatrie

ZWITSERLAND

Suisse Alémanique
BERN

Swiss Registry for Neuromuscular Disorders
Institute of Social and Preventive Medicine (ISPM)

DUITSLAND

Bayern
MÜNCHEN

MD-NET: Muscle Tissue Culture Collection (MTCC) (EuroBioBank partner)
Friedrich-Baur-Institut
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik

Netwerken van registers en biobanken

SPANJE

Cataluńa
BARCELONA

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

    Tyne & Wear
    NEWCASTLE UPON TYNE

    Gefinancierd door een IRDiRC-lidTREAT-NMD: Accelerating Treatments for Neuromuscular Diseases (registries)
  • Newcastle upon Tyne Hospitals NHS Trust
  • John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine
  • DUITSLAND

    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
  • SPANJE

    Madrid
    MADRID

    SpainRDR: Spanish Rare Disease Registries Research Network (patient registries)
  • ISCIII - Instituto de Salud Carlos III
  • Instituto de Investigación de Enfermedades Raras