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Registries and Biobanks
ITALY
EMILIA ROMAGNA
BOLOGNA
Multiple Osteochondromas Registry - REM
Istituto Ortopedico Rizzoli - Centro di Ricerca e Poliambulatorio
Laboratorio di Genetica Molecolare - S.S.D. di Genetica Medica e Malattie Rare Ortopediche
ITALY
EMILIA ROMAGNA
BOLOGNA
Biorepsitory of tissue and blood samples, lymphocytes and DNA from patients affected by solitary/multiple osteochondroma and peripheral chondrosarcoma
Istituto Ortopedico Rizzoli - Centro di Ricerca e Poliambulatorio
Laboratorio di Genetica Molecolare - S.S.D. di Genetica Medica e Malattie Rare Ortopediche
ITALY
EMILIA ROMAGNA
BOLOGNA
BIOGEN: Diagnostic and research genetic Biobank
Istituto Ortopedico Rizzoli - Centro di Ricerca e Poliambulatorio
Laboratorio di Genetica Molecolare - S.S.D. di Genetica Medica e Malattie Rare Ortopediche
AUSTRIA
STEIERMARK
GRAZ
Bone and soft tissue tumor registry Graz
Medizinische Universität Graz
Universitätsklinik für Orthopädie und Traumatologie
NETHERLANDS
Zuid-Holland
LEIDEN
Biobank Bone Remodeling and Mineralisation Disorders (whole blood/plasma/serum/urine/DNA/bone)
LUMC - Leids Universitair Medisch Centrum
Afdeling Endocrinologie
AUSTRIA
WIEN
WIEN
Austrian national cancer registry - contributes to the RARECARE project
Österreichisches Krebsregister
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
EuRRECa: European Registries for Rare Endocrine Conditions - Belgian contribution (HUDERF)
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Unité d'endocrinologie - HUDERF
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. Joăo, EPE
Serviço de Anatomia Patológica
PORTUGAL
SUL
LISBOA
Registo Oncológico Regional Sul - contribui para o projeto RARECARE
Instituto Portuguęs 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
Cataluńa
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
AUSTRIA
TIROL
INNSBRUCK
Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Zentrum Medizinische Genetik Innsbruck
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
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
ITALY
LAZIO
ROMA
RNMR: Italian National Rare Diseases Registry
ISS - Istituto Superiore di Sanitŕ
Centro Nazionale Malattie Rare
ITALY
LIGURIA
GENOVA
Telethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche
ITALY
LIGURIA
GENOVA
Genetic Biobank of the Human Genetics Laboratory (BGU-IGG)
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'Hygične
Département de génétique médicale
NETHERLANDS
Zuid-Holland
LEIDEN
ERN [BOND] - EuRR-Bone: European Registry for Rare Bone and Mineral Conditions
LUMC - Leids Universitair Medisch Centrum
Coordination center EuRR-Bone Registry
NORWAY
Řstlandet
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 Universal i Salut Pública
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 investigación en 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 Extremeńo 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
Observatorio de la Salud Comunitaria
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
SWITZERLAND
Suisse Alémanique
BERN
Swiss Rare Disease Registry (SRSK)
Institute of Social and Preventive Medicine (ISPM)
SWITZERLAND
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry (SRSK)
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
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
AUSTRIA
STEIERMARK
GRAZ
Styrian registry of congenital anomalies - contributes to the EUROCAT network
Medizinische Universität Graz
Forschungsverein zur Registrierung steirischer Geburtsfehlbildungen
AUSTRIA
TIROL
INNSBRUCK
Austrian registry for inborn errors of metabolism
Medizinische Universität Innsbruck
Pädiatrie I
GERMANY
Baden-Württemberg
REUTLINGEN
RAMEDIS : Rare Metabolic Diseases Database
Kreiskliniken Reutlingen
Klinik für Kinder- und Jugendmedizin
GERMANY
Baden-Württemberg
REUTLINGEN
RAMEDIS : Rare Metabolic Diseases mutation Database
Kreiskliniken Reutlingen
Klinik für Kinder- und Jugendmedizin
ITALY
LAZIO
ROMA
National Registry of Congenital Malformations (RNMC)
ISS - Istituto Superiore di Sanitŕ
Centro Nazionale Malattie Rare
NETHERLANDS
Gelderland
NIJMEGEN
AGORA: biobank (DNA) for congenital anomalies and childhood cancer
Radboudumc - Radboud universitair medisch centrum
Afdeling Kinderurologie
NETHERLANDS
Gelderland
NIJMEGEN
AGORA: biobank (DNA) for congenital anomalies and childhood cancer
Radboudumc - Radboud universitair medisch centrum
Afdeling Health Evidence
NETHERLANDS
Utrecht
UTRECHT
DDRMD - Dutch Diagnosis Registration Metabolic Diseases
UMC Utrecht - Universitair Medisch Centrum Utrecht
Polikliniek Metabole Ziekten
SPAIN
Madrid
MADRID
ECEMC: Registry of the Spanish Collaborative Study of Congenital Malformations
ISCIII - Instituto de Salud Carlos III
Unidad de Investigación sobre Anomalías Congénitas
Networks of registries and biobanks
ITALY
LOMBARDIA
VARESE
ENCR: Network europeo dei registri sul cancro
European Commission's Joint Research Centre in Ispra
European Commission's Joint Research Centre
MALTA
MALTA
MALTA
EuroBioBank: European Network of DNA, Cell and Tissue banks for rare diseases
Universita ta Malta
Molecular Genetics Laboratory
GERMANY
Baden-Württemberg
HEIDELBERG