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Finanziato da un ente associato a IRDiRC = Membro di una ERN =

Registri and biobanche

GERMANIA

Nordrhein-Westfalen
KÖLN

Tumor bank for embryonal tumors
Universitätsklinikum Köln
Pädiatrische Onkologie und Hämatologie

AUSTRALIA

Victoria
PARKVILLE

ENSAT: European Network for the Study of Adrenal Tumours
The University of Melbourne
Melbourne eResearch Group (MEG)

BELGIO

VLAAMS BRABANT
ZAVENTEM

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

ESTONIA

Tallinn
TALLINN

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

FINLANDIA

Finland
HELSINKI

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

FRANCIA

AUVERGNE-RHONE-ALPES
BRON

Regional registry of thyroid cancers in Rhône-Alpes
CHU de Lyon HCL - GH Est-Hôpital Neurologique P. Wertheimer
Service de médecine nucléaire

FRANCIA

GRAND-EST
REIMS

Marne-Ardennes thyroid cancer registry
CLCC Institut Jean Godinot
Consultation Thyroïde / Médecine nucléaire

FRANCIA

GRAND-EST
VANDOEUVRE-LÈS-NANCY

National registry of children solid tumors
Faculté de médecine de Nancy
Registre national des tumeurs solides de l'enfant

FRANCIA

ILE-DE-FRANCE
PARIS

FRANCIA

ILE-DE-FRANCE
VILLEJUIF

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

FRANCIA

PAYS DE LA LOIRE
ANGERS

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

GERMANIA

Baden-Württemberg
HEIDELBERG

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

GERMANIA

Bayern
MÜNCHEN

MCR - Munich Cancer Registry
LMU Klinikum der Universität München - Campus Großhadern
Tumorregister München

GERMANIA

Bayern
MÜNCHEN

Finanziato da un ente associato a IRDiRCNeoExNET registry: patient registry for neuroendocrine tumors
Medizinische Klinik und Poliklinik IV - Standort Ziemssenstraße
Medizinische Klinik und Poliklinik IV

GERMANIA

Bayern
NÜRNBERG

Bayern population based cancer registry
Registerstelle des Krebsregisters Bayern

GERMANIA

Berlin
BERLIN

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

GERMANIA

Berlin
BERLIN

GERMANIA

Bremen
BREMEN

Bremen cancer registry
Bremer Institut für Präventionsforschung und Sozialmedizin (BIPS)
Registerstelle des Bremer Krebsregisters

GERMANIA

Hamburg
HAMBURG

Hamburg cancer registry
Behörde für Wissenschaft, Forschung, Gleichstellung und Bezirke
Hamburgisches Krebsregister

GERMANIA

Hamburg
HAMBURG

German adrenal tumors registry
UKE - Universitätsklinikum Hamburg-Eppendorf
Praxis Prof. Dr. med. Wolfgang Saeger

GERMANIA

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

GERMANIA

Saarland
SAARBRÜCKEN

GERMANIA

Sachsen-Anhalt
MAGDEBURG

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

GERMANIA

Schleswig-Holstein
KIEL

German central children tumor registry
Universitätsklinikum Schleswig-Holstein - Campus Kiel
Institut für Pathologie des UKSH und der CAU zu Kiel

GERMANIA

Schleswig-Holstein
LÜBECK

Schleswig-Holstein cancer registry
Institut für Krebsepidemiologie e.V.
Registerstelle Krebsregister Schleswig-Holstein

IRLANDA

County Dublin
DUBLIN

Irish ENS@T Biobank and Registry - contributes to ENS@T registry
Endocrinology Department, Beaumont Hospital
Adrenal Service

ITALIA

LOMBARDIA
MILANO

Finanziato da un ente associato a IRDiRCERN [EURACAN] - STARTER: STarting an Adult Rare Tumor European Registry (avvio di un Registro Europeo dei tumori rari negli adulti)
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

NORVEGIA

Østlandet
OSLO

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

POLONIA

Kielce
KIELCE

Kielce cancer registry - contributes to the RARECARE project
Holycross Cancer Centre
Department of Cancer Control & Epidemiology

POLONIA

Kraków
KRAKOW

Cracow cancer registry - contributes to the RARECARE project
Centrum Onkologii - Instytut im. Marii Sklodowskiej-Curie, Oddzial w Krakowie
Department of Epidemiology

POLONIA

Warszawa
WARSZAWA

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

PORTOGALLO

CENTRO
COIMBRA

Adrenal tumor national registry
Hospitais da Universidade de Coimbra
Serviço de endocrinologia diabetes e metabolismo

PORTOGALLO

NORTE
PORTO

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

PORTOGALLO

SUL
LISBOA

Southern Portugal cancer registry - contributes to the RARECARE project
Instituto Português de Oncologia - Centro de Lisboa
Registo Oncológico Regional Sul

SLOVACCHIA

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

SPAGNA

Cataluña
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

SVEZIA

Region Stockholm
STOCKHOLM

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

SVIZZERA

Suisse Alémanique
BERN

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

SVIZZERA

Suisse Alémanique
BERN

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

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Central Registry of Rare Diseases (CRRD)
Sciensano
Health Services Research - Rare Diseases

FRANCIA

AUVERGNE-RHONE-ALPES
BRON

UMD MEN1 (multiple endocrine neoplasis I) mutations database
CHU de Lyon HCL - GH Est
Unité Médicale de Génétique des Cancers et des Maladies Multifactorielles

FRANCIA

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)

FRANCIA

ILE-DE-FRANCE
PARIS

National database for the study and follow-up of paediatric rare tumors
CLCC Institut Curie
Département d'Oncologie pédiatrique, adolescents et jeunes adultes

FRANCIA

OCCITANIE
MONTPELLIER

UMD VHL (von Hippel-Lindau tumor suppressor) mutations database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire

FRANCIA

PAYS DE LA LOIRE
ANGERS

National database for the study and follow-up of paediatric rare tumors
CHU d'Angers
Centre de ressources et de compétences sur la mucoviscidose CRCM

GERMANIA

Baden-Württemberg
FREIBURG

International pheochromocytoma and paraganglioma registry -terminated-
Universitätsklinikum Freiburg
Klinik für Innere Medizin IV - Nephrologie und Allgemeinmedizin

GERMANIA

Baden-Württemberg
FREIBURG

Von Hippel-Lindau registry -terminated-
Universitätsklinikum Freiburg
Klinik für Innere Medizin IV - Nephrologie und Allgemeinmedizin

GERMANIA

Bayern
MÜNCHEN

GERMANIA

Bayern
WÜRZBURG

NKR: German registry for adrenocortical carcinoma
Zentrum Innere Medizin (ZIM)
Medizinische Klinik und Poliklinik I - Endokrinologie und Diabetologie

GERMANIA

Bayern
WÜRZBURG

NKR: German adrenocortical carcinoma biobank
Zentrum Innere Medizin (ZIM)
Medizinische Klinik und Poliklinik I - Endokrinologie und Diabetologie

GERMANIA

Bayern
WÜRZBURG

Registry and biobank for rare thyroid and parathyroid carcinoma
Zentrum Innere Medizin (ZIM)
Medizinische Klinik und Poliklinik I - Endokrinologie und Diabetologie

GERMANIA

Hamburg
HAMBURG

German pituitary tumors registry
UKE - Universitätsklinikum Hamburg-Eppendorf
Praxis Prof. Dr. med. Wolfgang Saeger

GERMANIA

Niedersachsen
MEPPEN

VHL-Biobank
Verein VHL (von Hippel-Lindau) betroffener Familien e.V.

ITALIA

TOSCANA
FIRENZE

Registro italiano neoplasia endocrina multipla
Azienda Ospedaliero Universitaria Careggi
S.O.D. Malattie del Metabolismo Minerale ed Osseo

PAESI BASSI

Gelderland
NIJMEGEN

Radboud Biobank - Collection Pheochromocytoma/Paraganglioma (frozen and paraffin embedded tissue)
Radboudumc - Radboud universitair medisch centrum
Afdeling Endocriene Ziekten

PAESI BASSI

Gelderland
NIJMEGEN

Finanziato da un ente associato a IRDiRCERN [eUROGEN] - ERN eUROGEN Registry for rare urogenital diseases
Radboudumc - Radboud universitair medisch centrum
Afdeling Kinderurologie

PAESI BASSI

Gelderland
NIJMEGEN

Finanziato da un ente associato a IRDiRCERN [eUROGEN] - ERN eUROGEN Registry for rare urogenital diseases
Radboudumc - Radboud universitair medisch centrum
Afdeling Health Evidence

PAESI BASSI

Noord-Brabant
EINDHOVEN

Adrenocortical Carcinoma Biobank - part of the ENS@T Registry
Máxima Medisch Centrum, locatie Eindhoven
Afdeling Interne Geneeskunde

PAESI BASSI

Zuid-Holland
LEIDEN

European Parathyroid Tumor Registry
LUMC - Leids Universitair Medisch Centrum
Afdeling Pathologie

PORTOGALLO

SUL
LISBOA

Pituitary tumors national registry
Hospital Egas Moniz
Serviço de Endocrinologia

REGNO UNITO; GRAN BRETAGNA

Greater London
LONDON

Global Familial Isolated Pituitary Adenoma (FIPA) Biobank
Barts and The London School of Medicine and Dentistry
Endocrinology

SPAGNA

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

SPAGNA

Aragón
ZARAGOZA

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

SPAGNA

Asturias
OVIEDO

Registro MEN: Spanish registry of multiple endocrine neoplasia, pheochromocitomas and paragangliomas
Hospital Universitario Central de Asturias
Servicio de Endocrinología y Nutrición

SPAGNA

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

SPAGNA

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

SPAGNA

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

SPAGNA

Cataluña
BARCELONA

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

SPAGNA

Comunidad Valenciana
VALENCIA

SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras

SPAGNA

Extremadura
MÉRIDA

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

SPAGNA

Galicia
SANTIAGO DE COMPOSTELA

RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Análisis y Evaluación Asistencial

SPAGNA

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

SPAGNA

Madrid
MADRID

ReeR: Spanish National Registry of Rare Diseases
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

SPAGNA

Madrid
MADRID

Spanish Molecular Registry of Pituitary Adenomas (REMAH Nacional)
Sociedad Española de Endocrinología y Nutrición
Grupo de Neuroendocrinología de la SEEN

SPAGNA

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

SPAGNA

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

FRANCIA

ILE-DE-FRANCE
PARIS

French register of the SDH-related hereditary paraglioma
CHU Paris IdF Ouest - HEGP Hôpital Européen Georges Pompidou
Service de génétique

GERMANIA

Nordrhein-Westfalen
ESSEN

Registry for Merkel Cell Carcinoma
Universitätsklinikum Essen
DKTK Abteilung für Translationale Hautkrebsforschung

ITALIA

LIGURIA
GENOVA

Galliera Genetic Bank
Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche

FRANCIA

GRAND-EST
REIMS

French acromegaly registry
CHU de Reims - Hôpital Robert Debré
Service d'endocrinologie-diabétologie-nutrition

GERMANIA

Bayern
BAMBERG

German acromegaly registry
Endokrinologie im Zentrum

REGNO UNITO; GRAN BRETAGNA

Greater Manchester
MANCHESTER

UK national Acromegaly patient register
Christie Hospital
Department of Endocrinology

Network di registri and biobanche

SVEZIA

Region Skåne
LUND

Finanziato da un ente associato a IRDiRCEUROCRINE: European Surgical Registry for Rare Endocrine Tumours
  • Lunds Universitet
  • Institutionen för kliniska vetenskaper