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Registries and Biobanks

FRANCE

ILE-DE-FRANCE
SAINT-CLOUD

UMD BRCA1 (Breast cancer 1, early onset) mutations database
CLCC Hôpital René Huguenin - Institut Curie
Laboratoire d'oncogénétique

FRANCE

ILE-DE-FRANCE
SAINT-CLOUD

UMD BRCA2 (Breast cancer 2, early onset) mutations database
CLCC Hôpital René Huguenin - Institut Curie
Laboratoire d'oncogénétique

FRANCE

ILE-DE-FRANCE
SAINT-CLOUD

GENEPSO: French BRCA1 and 2 carrier cohort study
CLCC Hôpital René Huguenin - Institut Curie
Service d'Epidémiologie Clinique et d'Information Médicale, Oncogénétique Clinique

GERMANY

Hessen
MARBURG

German national case collection of familial pancreatic cancer
Universitätsklinikum Gießen und Marburg GmbH, Standort Marburg
Klinik für Visceral- Thorax- und Gefäßchirurgie

GERMANY

Nordrhein-Westfalen
KÖLN

Funded by an IRDiRC memberHerediCaRe - National register for the evaluation and improvement of risk-adapted prevention of hereditary breast and ovarian cancer
Zentrum für Familiären Brust- und Eierstockkrebs am Universitätsklinikum Köln
Deutsches Konsortium Familiärer Brust- und Eierstockkrebs - Koordination

NETHERLANDS

Gelderland
NIJMEGEN

Funded by an IRDiRC memberERN [GENTURIS] - GENTURIS registry: The Genetic Tumour Risk Syndromes Registry
Radboudumc - Radboud universitair medisch centrum
Sectie Klinische Genetica

PORTUGAL

CENTRO
COIMBRA

Central regional cancer patient registry
Instituto Português de Oncologia de Coimbra F. Gentil, EPE - IPO Coimbra, 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 Francisco Gentil, EPE - IPO Porto, EPE
Registo Oncológico Regional do Norte - RORENO

AUSTRIA

TIROL
INNSBRUCK

Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Institut für Humangenetik

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

CRRD: Central Registry of Rare Diseases
Sciensano
Health Services Research - Rare Diseases

ESTONIA

Tartu
TARTU

Biobank of the Estonian Genome Centre
Institute of Genomics of University of Tartu
The Estonian Genome Centre

FRANCE

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)

ITALY

EMILIA ROMAGNA
BOLOGNA

Funded by an IRDiRC memberTNGB: Telethon Network of Genetic Biobanks
Istituto Ortopedico Rizzoli - Ospedale
Struttura Complessa Malattie Rare Scheletriche

ITALY

LAZIO
ROMA

RNMR: Italian National Rare Diseases Registry
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare

ITALY

LIGURIA
GENOVA

Biobank of cell lines and DNA from patients affected by genetic diseases
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O.C. Laboratorio di Genetica Umana

ITALY

TOSCANA
PISA

Tuscan Registry of Rare Diseases
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Fondazione Toscana Gabriele Monasterio

ITALY

VENETO
PADOVA

Rare Diseases Registry - Veneto Region
Azienda Ospedaliera di Padova
Coordinamento Malattie Rare Regione del Veneto

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

NORWAY

Østlandet
OSLO

Norwegian registry on rare disorders
Oslo University Hospital, Ullevaal
Norsk register for sjeldne diagnoser

PORTUGAL

SUL
LISBOA

Biobanco-IMM
Faculdade de Medicina da Universidade de Lisboa
Biobanco-IMM

SPAIN

Andalucía
SEVILLA

Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Subdirección Técnica Asesora de Gestión de la Información

SPAIN

Aragón
ZARAGOZA

Funded by an IRDiRC memberRare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad
Servicio de Evaluación y Acreditación Sanitaria

SPAIN

Cantabria
SANTANDER

Population registry of rare diseases and congenital anomalies of Cantabria (Spain)
Gobierno de Cantabria. Consejería de Sanidad y Servicios Sociales
Servicio de Atención Sanitaria

SPAIN

Comunidad Valenciana
VALENCIA

SIER-CV: Information System on rare diseases in Valencian Community (Spain)
Generalitat Valenciana. Conselleria de Sanitat
Servicio de Estudios Epidemiológicos y Vigilancia de Enfermedades No Transmisibles

SPAIN

Comunidad Valenciana
VALENCIA

CIBERER Biobank (Biobank of rare diseases)
IIS La Fe - Instituto de Investigación Sanitaria La Fe
Grupo de Biomedicina molecular, celular y genómica

SPAIN

Comunidad Valenciana
VALENCIA

CIBERER Biobank (Biobank of rare diseases)
INCLIVA - Facultad de Medicina de la Universidad de Valencia
Grupo de investigación en fisiopatología celular y orgánica del estrés oxidativo

SPAIN

Extremadura
MÉRIDA

Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeño de Salud
Subdirector de Epidemiología

SPAIN

Galicia
SANTIAGO DE COMPOSTELA

RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Atención Hospitalaria

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

Madrid
MADRID

Funded by an IRDiRC memberRePER: Rare Diseases Patient Registry
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

SPAIN

Murcia
MURCIA

SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
Región de Murcia. Consejería de Sanidad y Política Social
Servicio de Planificación y Financiación Sanitaria

SPAIN

Navarra
PAMPLONA

RERNA: Population-based Rare Disease Registry of Navarre (Spain)
Instituto de Salud Pública y Laboral de Navarra

SPAIN

País Vasco
BARAKALDO

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

SPAIN

País Vasco
VITORIA-GASTEIZ

Rare Diseases Registry of the Basque Country
Gobierno Vasco. Departamento de Salud
Registro de Enfermedades Raras de la Comunidad Autónoma de Euskadi

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

UNITED STATES

South Dakota
SIOUX FALLS

FRANCE

BOURGOGNE-FRANCHE-COMTE
DIJON

Breast and other gynecological cancers registry of Côte-d'Or
CLCC Georges François Leclerc
Centre de Recherche Clinique (CRC)

ESTONIA

Tallinn
TALLINN

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

FINLAND

Finland
HELSINKI

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

GERMANY

Baden-Württemberg
HEIDELBERG

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

GERMANY

Bayern
MÜNCHEN

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 - contributes to ECIS (European Cancer Information System) and GCO (Global Cancer Observatory)
Behörde für Wissenschaft, Forschung, Gleichstellung und Bezirke
Hamburgisches Krebsregister

GERMANY

Rheinland-Pfalz
MAINZ

German childhood cancer registry (Partner of ACCIS: Automated Childhood Cancer Information System, Member of IACR and ENCR)
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

ITALY

LOMBARDIA
MILANO

Funded by an IRDiRC memberERN [EURACAN] - STARTER: STarting an Adult Rare Tumor European Registry
Fondazione IRCCS Istituto Nazionale dei Tumori
Fondazione IRCCS - Istituto Nazionale dei Tumori

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

PORTUGAL

NORTE
PORTO

Tumour bank
Centro Hospitalar Universitário de S. João, EPE - CHUSJ, EPE
Serviço de Anatomia Patológica - CHUSJ, EPE

PORTUGAL

SUL
LISBOA

Registo Oncológico Regional Sul - contribui para o projeto RARECARE
Instituto Português de Oncologia de Lisboa Francisco Gentil, EPE
Registo Oncológico Regional Sul

SLOVENIA

SLOVENIA
LJUBLJANA

Cancer Registry of Republic of Slovenia - contributes to the RARECARE project
Institute of Oncology Ljubljana
Cancer Registry of Slovenia

SPAIN

Cataluña
ESPLUGUES DE LLOBREGAT

Pediatric Biobank for Research
Fundació Sant Joan de Déu - Institut de Recerca Sant Joan de Déu
Biobanco Pediátrico para la Investigación

SWEDEN

Region Stockholm
SOLNA

SBCR: Swedish Childhood Cancer Registry
Astrid Lindgrens Barnsjukhus
Astrid Lindgren Children's Hospital