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Funded by an IRDiRC member = Member of a ERN =

Registries and Biobanks

GERMANY

Sachsen-Anhalt
MAGDEBURG

GPOH-MET Registry: Registry for children and adolescents with malignant endocrine tumour
Universitätsklinikum Magdeburg A.ö.R
Universitätskinderklinik

SPAIN

Cataluńa
BARCELONA

RETEGEP: Spanish Registry of Gastroenteropancreatic Neuroendocrine Tumors
Secretaria Técnica GETNE - TACTICS MD
Grupo Espańol de Tumores Neuroendocrinos

BELGIUM

VLAAMS BRABANT
ZAVENTEM

ENETS: European Neuroendocrine Tumour Registry
BGDO (Belgian Group of Digestive Oncology)_ENETS Registry
Neuroendocrine Tumours Working group

FRANCE

ILE-DE-FRANCE
VILLEJUIF

ENETS Registry: European Neuro-Endocrine Tumors Group
CLCC Institut Gustave Roussy
Cancers endocriniens - Surrénales et Tumeurs neuro-endocrines

FRANCE

PAYS DE LA LOIRE
ANGERS

GTE: French registry of endocrine tumors
CHU d'Angers
Département d'endocrinologie, diabétologie et nutrition

GERMANY

Baden-Württemberg
TÜBINGEN

STEP Registry: Registry for rare tumors in children and adolescents
Universitätsklinik für Kinder- und Jugendmedizin Tübingen
Abteilung für allgemeine Pädiatrie, Hämatologie/Onkologie

GERMANY

Bayern
MÜNCHEN

Funded by an IRDiRC memberNeoExNET registry: patient registry for neuroendocrine tumors
Medizinische Klinik und Poliklinik IV - Standort Ziemssenstraße
Medizinische Klinik und Poliklinik IV

GERMANY

Berlin
BERLIN

NET-Registry: German neuroendocrine gastrointestinal tumors
Charité - Universitätsmedizin Berlin (CVK)
Medizinische Klinik mit Schwerpunkt Hepatologie und Gastroenterologie (CVK)

GERMANY

Nordrhein-Westfalen
DORTMUND

STEP Registry: Registry for rare tumors in children and adolescents
Klinikum Dortmund gGmbH - Klinikzentrum Mitte
Klinik für Kinder- und Jugendmedizin

SWITZERLAND

Suisse Alémanique
BERN

SwissNET - Registry for Neuroendocrine Tumours in Switzerland
University Hospital Inselspital
SwissNET - Registry for Neuroendocrine Tumours in Switzerland

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
Sciensano
Health Services Research - Rare Diseases

FRANCE

BOURGOGNE-FRANCHE-COMTE
DIJON

Registry for digestive cancers in Burgundy
Centre de Recherche Inserm UMR866 Lipides, Nutrition, Cancer - LNC
Epidémiologie et recherche clinique en oncologie digestive

FRANCE

BRETAGNE
BREST

Digestive Tumor Registry of Finistčre
CHU de Brest - Hôpital de la Cavale Blanche
Service d'Hépatologie Gastro-Entérologie

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)

FRANCE

NORMANDIE
CAEN

Registry of digestive tumors in Calvados
Centre François Baclesse
Unité Anticipe (Inserm U1086): Unité de Recherche Interdisciplinaire pour la Prévention et le Traitement des Cancers

GERMANY

Nordrhein-Westfalen
KÖLN

Tumor bank for embryonal tumors
Universitätsklinikum Köln
Pädiatrische Onkologie und Hämatologie

SPAIN

Andalucía
SEVILLA

Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Dirección General de Calidad, Investigación y Gestión del Conocimiento

SPAIN

Aragón
ZARAGOZA

Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad, Bienestar Social y Familia
Servicio de Evaluación y Acreditación Sanitaria

SPAIN

Baleares
PALMA DE MALLORCA

Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Servicio de Epidemiología

SPAIN

Baleares
PALMA DE MALLORCA

Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Dirección General de Salud Pública y Consumo

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)
FISABIO - Salud Pública
Área de Enfermedades Raras

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 Análisis y Evaluación Asistencial

SPAIN

Madrid
MADRID

SIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Subdirección de Promoción y Prevención de la Salud
Subdirección de Promoción y Prevención de la Salud

SPAIN

Madrid
MADRID

ReeR: Spanish National Registry of Rare Diseases
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

Population registry of rare diseases of Navarra (Spain)
Instituto de Salud Pública y Laboral de Navarra
Sección de Epidemiología de Enfermedades No Transmisibles

SWITZERLAND

Suisse Alémanique
BERN

Swiss Rare Disease Registry
Institute of Social and Preventive Medicine (ISPM)

SWITZERLAND

Suisse Alémanique
ZÜRICH

Swiss Rare Disease Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten

UNITED KINGDOM

Glasgow
GLASGOW

Funded by an IRDiRC memberERN [Endo-ERN] - EuRRECa: Registres européens pour des conditions endocriniennes rares
Royal Hospital For Children, NHS Greater Glasgow & Clyde
Child Health, School of Medicine

AUSTRIA

WIEN
WIEN

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
PARIS

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
LMU Klinikum der Universität München - Campus Großhadern
Tumorregister München

GERMANY

Bayern
NÜRNBERG

Bayern population based cancer registry
Registerstelle des Krebsregisters Bayern

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
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

ICELAND

ICELAND
REYKJAVIK

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

MALTA

MALTA
GUARDAMANGIA

Maltese cancer registry - contributes to the RARECARE project
Departement of Health Information
Malta National Cancer Registry

NORWAY

Řstlandet
OSLO

Norwegian cancer registry - contributes to the RARECARE project
Institute of Population-Based Cancer Research
Cancer Registry of Norway

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

POLAND

Warszawa
WARSZAWA

Mazovian Cancer Registry - contributes to the RARECARE project
Centrum Onkologii - Instytut im. Marii Sklodowskiej-Curie
Cancer Center and Institute of Oncology

PORTUGAL

NORTE
PORTO

Tumour bank
Centro Hospitalar de S. Joăo, EPE
Serviço de Anatomia Patológica

PORTUGAL

SUL
LISBOA

Registo Oncológico Regional Sul - contribui para o projeto RARECARE
Instituto Portuguęs de Oncologia - Centro de Lisboa
Registo Oncológico Regional Sul

SLOVAKIA

Bratislavsky kraj
BRATISLAVA

National cancer registry (contributes to the RARECARE project)
National Health Information Center
National Cancer Registry

SLOVENIA

SLOVENIA
LJUBLJANA

Slovenian cancer registry - contributes to the RARECARE project
Institute of Oncology Ljubljana
Cancer Registry of Slovenia

SPAIN

Cataluńa
ESPLUGUES DE LLOBREGAT

Biobank of the Sant Joan de Déu Children's Hospital for Research (BHISJDI)
Fundació Sant Joan de Déu - Institut de Recerca Sant Joan de Déu
Biobanco del Hospital Infantil Sant Joan de Déu para la investigación

SWEDEN

Region Stockholm
STOCKHOLM

Swedish Childhood Cancer Registry
Astrid Lindgren Children's Hospital - Karolinska
Paediatric Oncology

SWITZERLAND

Suisse Alémanique
BERN

Swiss Childhood Cancer Registry
Institute of Social and Preventive Medicine (ISPM)

Networks of registries and biobanks

SWEDEN

Region Skĺne
LUND

Funded by an IRDiRC memberEUROCRINE: European Surgical Registry for Rare Endocrine Tumours
  • Lunds Universitet
  • Institutionen för kliniska vetenskaper