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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
HerediCaRe - 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
ERN [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
UNITED KINGDOM
Edinburgh
EDINBURGH
Existing Breast Cancer Research Tissue Bank & Database: Edinburgh Breast Unit and Edinburgh Cancer Research Centre Breast Cancer specimen collection and database established prior to September 2006
Breakthrough Research Unit
Edinburgh Edinburgh Breast Unit
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
TNGB: 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
Korean 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
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
Rare 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
RePER: 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
Basque 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
National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)
Public Health England (PHE)
NCARDRS
UNITED STATES
South Dakota
SIOUX FALLS
CORDS Registry: Coordination of Rare Diseases at Sanford Registry
Sanford Research
Standford Research
FRANCE
BOURGOGNE-FRANCHE-COMTE
DIJON
Breast and other gynecological cancers registry of Côte-d'Or
CLCC Georges François Leclerc
Centre de Recherche Clinique (CRC)
AUSTRIA
WIEN
WIEN
Austrian national cancer registry - contributes to the RARECARE project
Österreichisches Krebsregister
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
MCR - Munich Cancer Registry - contributes to ENCR (European Network of Cancer Registries) and IACR (International Association of Cancer Registries)
LMU Klinikum der Universität München - Campus Großhadern
Tumorregister München
GERMANY
Bayern
NÜRNBERG
Bavarian Cancer Registy - contributes to ENCR (European Network of Cancer Registries) and IACR (International Association of Cancer Registries)
Registerstelle des Krebsregisters Bayern
GERMANY
Berlin
BERLIN
Common cancer registry of Berlin, Brandenburg, Mecklenburg-Western Pomerania, Saxony-Anhalt and the free states Saxony and Thuringia
Gemeinsames Krebsregister (GKR)
Registerstelle des Gemeinsamen Krebsregisters (GKR)
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
Saarland Cancer Registry - contributes to ECIS (European Cancer Information System), IARC (International Agency for Research on Cancer) and RARECARE
Ministerium für Arbeit, Soziales, Frauen und Gesundheit
Krebsregister Saarland
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
ERN [EURACAN] - STARTER: STarting an Adult Rare Tumor European Registry
Fondazione IRCCS Istituto Nazionale dei Tumori
Fondazione IRCCS - Istituto Nazionale dei Tumori
ITALY
VENETO
PADOVA
ERN [PAEDCAN] - PARTNER: Paediatric Rare Tumours Networks - European Registry
Azienda Ospedaliera di Padova
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