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Funded by an IRDiRC member =

Registries and Biobanks

GERMANY

Baden-Württemberg
STUTTGART

CWS-SoTiSaR: A registry for soft tissue sarcoma and other soft tissue tumours in children, adolescents, and young adults
Klinikum Stuttgart - Standort Olgahospital
Pädiatrie 5 - Onkologie, Hämatologie und Immunologie

GERMANY

Bayern
ERLANGEN

STEP Registry: Registry for rare tumors in children and adolescents
Kinder- und Jugendklinik des Universitätsklinikums Erlangen
Kinder- und Jugendklinik

GERMANY

Hessen
FRANKFURT AM MAIN

CWS-SoTiSaR: A registry for soft tissue sarcoma and other soft tissue tumours in children, adolescents, and young adults
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Klinik für Kinder- und Jugendmedizin

GERMANY

Nordrhein-Westfalen
DORTMUND

STEP Registry: Registry for rare tumors in children and adolescents
Klinikum Dortmund gGmbH - Klinikzentrum Mitte
Klinik für Kinder- und Jugendmedizin

AUSTRIA

WIEN
WIEN

ESTONIA

Tallinn
TALLINN

Estonian cancer registry - contributes to the RARECARE project
National Institute for Health Development
Estonian Cancer Registry

FINLAND

Finland
HELWINKI>/`>

Finnish cancer registry - contributes to the RARECARE project, Suomen Syöpärekisteri
Syöpätautien tilastollinen ja epidemiologinen tutkimuslaitos
Finnish Cancer Registry

FRANCE

ILE-DE-FRANCE
PARIS

Funded by an IRDiRC memberNational cohort for the evaluation of individual burden in the course of rare skin diseases
CHU Paris - Hôpital Necker-Enfants Malades
Centre MAGEC (MAladies rares Génétiques à Expression Cutanée)

GERMANY

Baden-Württemberg
HEIDELBERG

Epidemiological cancer registry Baden-Württemberg
Epidemiologisches Krebsregister am DKFZ Heidelberg
Epidemiologisches Krebsregister Baden-Württemberg

GERMANY

Bayern
MÜNCHEN

MCR - Munich Cancer Registry
LMU Klinikum der Universität München - Campus Großhadern
Tumorregister München

GERMANY

Bayern
NÜRNBERG

Bayern population based cancer registry
Registerstelle des Krebsregisters Bayern

GERMANY

Berlin
BERLIN

GERMANY

Bremen
BREMEN

Bremen cancer registry
Bremer Institut für Präventionsforschung und Sozialmedizin (BIPS)
Registerstelle des Bremer Krebsregisters

GERMANY

Hamburg
HAMBURG

Hamburg cancer registry
Behörde für Soziales, Familie, Gesundheit und Verbraucherschutz
Hamburgisches Krebsregister

GERMANY

Rheinland-Pfalz
MAINZ

German childhood cancer registry (Partner of ACCIS: Automated Childhood Cancer Information System)
Institut für Medizinische Biometrie, Epidemiologie und Informatik (IMBEI)
Deutsches Kinderkrebsregister am IMBEI

GERMANY

Saarland
SAARBRÜCKEN

GERMANY

Schleswig-Holstein
KIEL

German central children tumor registry
Universitätsklinikum Schleswig-Holstein - Campus Kiel
Institut für Pathologie des UKSH und der CAU zu Kiel

GERMANY

Schleswig-Holstein
LÜBECK

Schleswig-Holstein cancer registry
Institut für Krebsepidemiologie e.V.
Registerstelle Krebsregister Schleswig-Holstein

ICELAND

ICELAND
REYKJAVIK

MALTA

MALTA
GUARDAMANGIA

Maltese cancer registry - contributes to the RARECARE project
Departement of Health Information
Malta National Cancer Registry

NORWAY

Østlandet
OSLO

Norwegian cancer registry - contributes to the RARECARE project
Institute of Population-Based Cancer Research
Cancer Registry of Norway

POLAND

Kielce
KIELCE

Kielce cancer registry - contributes to the RARECARE project
Holycross Cancer Centre
Department of Cancer Control & Epidemiology

POLAND

Kraków
KRAKOW

Cracow cancer registry - contributes to the RARECARE project
Centrum Onkologii - Instytut im. Marii Sklodowskiej-Curie, Oddzial w Krakowie
Department of Epidemiology

POLAND

Warszawa
WARSZAWA

Mazovian Cancer Registry - contributes to the RARECARE project
Centrum Onkologii - Instytut im. Marii Sklodowskiej-Curie
Cancer Center and Institute of Oncology

PORTUGAL

SUL
LISBOA

Registo Oncológico Regional Sul - contribui para o projeto RARECARE
Instituto Português de Oncologia - Centro de Lisboa
Registo Oncológico Regional Sul

SLOVAKIA

Bratislavsky kraj
BRATISLAVA

National cancer registry (contributes to the RARECARE project)
National Health Information Center
National Cancer Registry

SLOVENIA

SLOVENIA
LJUBLJANA

Slovenian cancer registry - contributes to the RARECARE project
Institute of Oncology Ljubljana
Cancer Registry of Slovenia

SWEDEN

Stockholms läns landsting
STOCKHOLM

Swedish Childhood Cancer Registry
Astrid Lindgren Children's Hospital - Karolinska
Pediatric Oncology

SWITZERLAND

Suisse Alémanique
BERN

Swiss Childhood Cancer Registry
Institute of Social and Preventive Medicine (ISPM)

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

ITALY

LIGURIA
GENOVA

Cell line and DNA Biobank from patients affected by genetic diseases
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche

ITALY

LIGURIA
GENOVA

Funded by an IRDiRC memberTelethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle 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

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

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

Funded by an IRDiRC memberRegional 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

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

GERMANY

Schleswig-Holstein
LÜBECK

GEKID: Association of the epidemiologic cancer registries
  • Institut für Krebsepidemiologie e.V.
  • Registerstelle Krebsregister Schleswig-Holstein
  • ITALY

    LIGURIA
    GENOVA

    TELETHON NETWORK OF GENETIC BIOBANKS
  • IRCCS Istituto G. Gaslini - Ospedale Pediatrico
  • Centro di diagnostica genetica e biochimica delle 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