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Funded by an IRDiRC member =

Registries and Biobanks

GERMANY

Niedersachsen
HANNOVER

German Fanconi anemia registry
Medizinische Hochschule Hannover
Klinik für Pädiatrische Hämatologie und Onkologie

ITALY

CAMPANIA
NAPOLI

RIAF: Fanconi's Anemia Italian Registry
P.S.I. "Elena d'Aosta"
U.O.C. Servizio di Genetica

ITALY

LIGURIA
GENOVA

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

SPAIN

Cataluña
BELLATERRA

DNA repair biobank
Universitat Autònoma de Barcelona
Grupo de inestabilidad genómica y reparación del DNA

SPAIN

Madrid
MADRID

Fanconi anemia patient registry database
CIEMAT - Centro de Investigaciones Energéticas Medioambientales y Tecnológicas
Terapias innovadoras en el sistema hematopoyético

UNITED KINGDOM

North Yorkshire
YORK

UK & Ireland Fanconi Anaemia Registry
The University of York
Epidemiology and Genetics Unit

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCA gene (Fanconi anemia, complementation group A) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCB gene (Fanconi anemia, complementation group B) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCC gene (Fanconi anemia, complementation group C) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCD1 gene (Fanconi anemia, complementation group D1) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCD2 gene (Fanconi anemia, complementation group D2) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCE gene (Fanconi anemia, complementation group E) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCF gene (Fanconi anemia, complementation group F) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCG gene (Fanconi anemia, complementation group G) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCI gene (Fanconi anemia, complementation group I) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCJ gene (Fanconi anemia, complementation group J) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCL gene (Fanconi anemia, complementation group L) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCM gene (Fanconi anemia, complementation group M) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: FANCN gene (Fanconi anemia, complementation group N) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

IFAR: International Fanconi Anemia patient Registry
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

LOVD-FANC: RAD51 gene (RAD51 homolog C (S. cerevisiae)) variant database
The Rockefeller University
Laboratory of Genome Maintenance

UNITED STATES

New York
NEW YORK

GERMANY

Niedersachsen
HANNOVER

Central national database for incidence and outcome of congenital bone marrow failure syndromes, biobank and database of the BMFS-Network
Medizinische Hochschule Hannover
Koordinationsstelle des Netzwerkes für angeborene Störungen der Blutbildung

PORTUGAL

CENTRO
COIMBRA

Central regional cancer patient registry
Instituto Português de Oncologia de Coimbra de Francisco Gentil, EPE
Registo Oncológico Regional - Zona Centro

PORTUGAL

ILHAS
AÇORES

Açores regional cancer patient registry (RORA)
Centro de Oncologia dos Açores Prof Doutor José Conde
Registo Oncológico Regional dos Açores

PORTUGAL

NORTE
PORTO

North regional cancer registry (RORENO)
Instituto Português de Oncologia do Porto, EPE / IPOFG - CRO Porto
Registo Oncológico Regional do Norte

PORTUGAL

NORTE
VILA NOVA DE GAIA

Vila Nova de Gaia regional cancer registry (ROG)
Centro Hospitalar de Vila Nova de Gaia
Registo de Cancro (ROG)

UNITED KINGDOM

Greater Manchester
MANCHESTER

DYSCERNE's dysmorphology diagnostic system (DDS)
St Mary's Hospital
Manchester Cente for Genomic Medicine

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

FRANCE

ILE-DE-FRANCE
PARIS

French constitutive hematologic diseases registry
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service d'hématologie pédiatrique

GERMANY

Rheinland-Pfalz
MAINZ

Mainz registry of congenital anomalies - contributes to the EUROCAT network
Universitätsmedizin Mainz
Geburtenregister Mainzer Modell

GERMANY

Sachsen-Anhalt
MAGDEBURG

Centre Saxony-Anhalt registry of congenital anomalies - contributes to the EUROCAT network
Universitätsklinikum Magdeburg A.ö.R
MONZ - Fehlbildungsmonitoring Sachsen-Anhalt

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

SPAIN

Comunidad Valenciana
VALENCIA

SPAIN

Madrid
MADRID

ECEMC: Registry of the Spanish Collaborative Study of Congenital Malformations
Centro de Investigación sobre Anomalías Congénitas

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

FINLAND

Finland
HELSINKI

ITALY

EMILIA ROMAGNA
BOLOGNA

Italian registry of skeletal dysplasia
Istituto Ortopedico Rizzoli - Centro di Ricerca e Poliambulatorio
Laboratorio di Genetica Molecolare - S.S.D. di Genetica Medica e Malattie Rare Ortopediche

Networks of registries and biobanks

GERMANY

Niedersachsen
HANNOVER

BMFS: Network for Congenital Bone Marrow Failure Syndromes (patient registry)
  • Medizinische Hochschule Hannover
  • Koordinationsstelle des Netzwerkes für angeborene Störungen der Blutbildung
  • ITALY

    LIGURIA
    GENOVA

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