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Registries and Biobanks

AUSTRIA

SALZBURG
SALZBURG

AGMT (Arbeitsgemeinschaft medikamentöse Tumortherapie): PTCL registry (T-cell lymphoma in Austria)
Universitätsklinikum der Paracelsus Medizinischen Privatuniversität
Universitätsklinik für Innere Medizin III

FRANCE

ILE-DE-FRANCE
VILLEJUIF

RNHE - National registry of pediatric hematological malignancies
GHU Paris-Sud - Hôpital Paul Brousse
Epidémiologie environnementale des cancers

FRANCE

NOUVELLE AQUITAINE
BORDEAUX

GFELC registry: French primary cutaneous lymphoma registry
CHU de Bordeaux - Hôpital Saint André
Unité de Dermatologie Cancérologie

GERMANY

Sachsen-Anhalt
HALLE (SAALE)

German T-cell lymphoma registry (T-NHL) of the German Lymphoma Alliance
Universitätsklinikum Halle (Saale)
Universitätsklinik und Poliklinik für Innere Medizin IV

SPAIN

Madrid
MADRID

Spanish Academy of Dermatology and Venereology (AEDV) Registry of primary cutaneous lymphoma
Academia Espańola de Dermatología y Venereología
Unidad de investigación de la Fundación Academia Espańola de Dermatología y Venereología

AUSTRIA

WIEN
WIEN

GERMANY

Hamburg
HAMBURG

NHL-BFM Registry 2012: Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin Lymphoma diagnosed in children and adolescents
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Pädiatrische Hämatologie und Onkologie

GERMANY

Nordrhein-Westfalen
MÜNSTER

NHL-BFM Registry 2012: Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin Lymphoma diagnosed in children and adolescents
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Pädiatrische Hämatologie und Onkologie

ITALY

TOSCANA
SESTO FIORENTINO (FIRENZE)

Da Vinci European Biobank
Universitŕ degli Studi di Firenze
Da Vinci European Biobank

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

UNITED KINGDOM

Surrey
SUTTON

AUSTRALIA

Victoria
MEKBOURNE

Lymphoma and Related Diseases Registry (LaRDR)
Monash University
Department of Epidemiology & Preventive Medicine

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

FRANCE

ILE-DE-FRANCE
VILLEJUIF

French registry of adult lymphomas
GHU Paris-Sud - Hôpital Paul Brousse
Epidémiologie environnementale des cancers

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

Rheinland-Pfalz
MAINZ

GLA Registry for Malignant Lymphoma of the German Lymphoma Alliance
Universitätsmedizin Mainz
III. Medizinische Klinik und Poliklinik

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. Joăo, EPE - CHUSJ, EPE
Serviço de Anatomia Patológica - CHUSJ, EPE

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

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

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

GERMANY

Schleswig-Holstein
KIEL

German Lymph Node Registry - tumor bank
Universitätsklinikum Schleswig-Holstein - Campus Kiel
Sektion Hämatopathologie und Lymphknotenregister am Institut für Pathologie

ITALY

LAZIO
ROMA

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

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

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

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

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
Observatorio de la Salud Comunitaria

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 STATES

South Dakota
SIOUX FALLS

FRANCE

BOURGOGNE-FRANCHE-COMTE
DIJON

RHEMCO - Côte d'Or registry of hematological malignancies
Université de Bourgogne
Faculté de Médecine

FRANCE

NORMANDIE
CAEN

Basse Normandie registry of hematological malignancies
CHU de Caen - Hôpital de la Côte de Nacre
Laboratoire d'hématologie biologique

FRANCE

NOUVELLE AQUITAINE
BORDEAUX

Gironde registry of hematological malignancies
CLCC Institut Bergonié
Service d'information médicale et de surveillance épidémiologique

UNITED KINGDOM

West Midlands
BIRMINGHAM

CEHRB - Central England Haemato-Oncology Research Biobank
Birmingham Women's NHS Foundation Trust
Birmingham Women's and Children's

UNITED KINGDOM

West Midlands
BIRMINGHAM

CEHRB - Central England Haemato-Oncology Research Biobank
Birmingham Women's NHS Foundation Trust
West Midlands Regional Genetics Laboratory (part of the West Midlands Regional Genetics Service)

SPAIN

Madrid
MADRID

Funded by an IRDiRC memberERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil

Networks of registries and biobanks

ITALY

LOMBARDIA
VARESE

Funded by an IRDiRC memberENCR: 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