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Registries and Biobanks

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

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

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

ILE-DE-FRANCE
PARIS

Funded by an IRDiRC memberERN [Endo-ERN] - EuRRECa: European Registries for Rare Endocrine Conditions
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Délégation à la Recherche Clinique et à l'Innovation de l'AP-HP

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 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 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

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
PARIS

French registry of hereditary dyslipidemia in children: familial combined dyslipidemias
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service de Nutrition et Gastroentérologie Pédiatriques

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

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)

NETHERLANDS

Zuid-Holland
ROTTERDAM

Biobank Obesity Center CGG (blood/serum/plasma/saliva/hair/DNA)
Erasmus MC - Erasmus Medisch Centrum
Centrum Gezond Gewicht, locatie Erasmus MC

SWITZERLAND

Suisse Alémanique
BERN

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

SWITZERLAND

Suisse Alémanique
ST. GALLEN

Swiss Diabetes Registry (SwissDiab)
Kantonsspital St. Gallen
Klinik für Allgemeine Innere Medizin/Hausarztmedizin

AUSTRALIA

Victoria
PARKVILLE

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

FRANCE

AUVERGNE-RHONE-ALPES
BRON

French registry of rare genetic metabolism disorders of steroids - contributing to the international RGSDC registry
CHU de Lyon HCL - GH Est
Service de pathologies endocriniennes rénales, musculaires et mucoviscidose

FRANCE

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

FRANCE

GRAND-EST
REIMS

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

FRANCE

GRAND-EST
VANDOEUVRE-LÈS-NANCY

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

FRANCE

ILE-DE-FRANCE
PARIS

Motor Function Measure database (Neuromuscular Diseases)
Institut de Myologie - Hôpital Pitié-Salpêtrière
Unité clinique de pathologie neuromusculaire

GERMANY

Bayern
MÜNCHEN

MD-NET: Muscle Tissue Culture Collection (MTCC) (EuroBioBank partner)
Friedrich-Baur-Institut
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik

GERMANY

Bayern
MÜNCHEN

Conn Registry: German registry of primary aldosteronism
Medizinische Klinik und Poliklinik IV - Standort Ziemssenstraße
Medizinische Klinik und Poliklinik IV

GERMANY

Bayern
MÜNCHEN

CUSTODES - Cushing syndrome registry: therapy and outcome in germany - contributes to the ERCUSYN - European Register on Cushing's Syndrome
Medizinische Klinik und Poliklinik IV - Standort Ziemssenstraße
Medizinische Klinik und Poliklinik IV

GERMANY

Hamburg
HAMBURG

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

GERMANY

Hamburg
HAMBURG

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

GERMANY

Sachsen-Anhalt
MAGDEBURG

GPOH-MET Registry: Registry for children and adolescents with malignant endocrine tumour
Universitätsklinikum Magdeburg A.ö.R
Bereich Pädiatrische Hämatologie und Onkologie

IRELAND

County Dublin
DUBLIN

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

ITALY

CAMPANIA
NAPOLI

Bank for the Diagnosis and Research on neuromuscular Disorders (NHMGB) (EuroBioBank partner)
AOU Università degli Studi della Campania "Luigi Vanvitelli" - Centro storico
Servizio di Cardiomiologia e Genetica Medica

ITALY

LAZIO
ROMA

RNIC: National Registry of patients with Congenital Hypothyroidism
ISS - Istituto Superiore di Sanità
Dipartimento di Biologia Cellulare e Neuroscienze

ITALY

LIGURIA
GENOVA

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

ITALY

LOMBARDIA
MILANO

DNA cell lines and nerve muscle cardiac tissues bank (EuroBioBank partner)
Fondazione IRCCS Ca' Granda - Ospedale Maggiore Policlinico
U.O. Malattie Neuromuscolari

ITALY

LOMBARDIA
MILANO

Movement Disorders Biobank (EuroBioBank partner)
Fondazione IRCCS Istituto Neurologico "C. Besta" - sede Bicocca
U.O. di Neurogenetica Molecolare

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

Limburg
MAASTRICHT

Biobank Myotonic Dystrophy type 1 (DNA, serum, fibroblasts and pericytes)
AZM - Academisch Ziekenhuis Maastricht
Afdeling Neurologie

NETHERLANDS

Limburg
MAASTRICHT

Biobank Myotonic Dystrophy type 1 (DNA, serum, fibroblasts and pericytes)
AZM - Academisch Ziekenhuis Maastricht
Biobank Klinische Genetica Maastricht

NETHERLANDS

Noord-Holland
AMSTERDAM

The ALD Connect Patient Portal
Amsterdam UMC, locatie AMC
Laboratorium Genetische Metabole Ziekten

NETHERLANDS

Zuid-Holland
ROTTERDAM

ENCORE Biobank for Neurodevelopmental Disorders (blood/saliva/skin biopsies)
Erasmus MC - Erasmus Medisch Centrum
Afdeling Neurowetenschappen

POLAND

Warszawa
WARSAW

Polish Registry of Patients with Neuromuscular Diseases contributes to the TREAT-NMD network
Warszawski Uniwersytet Medyczny - Medical University of Warsaw
Klinika Neurologii - Department of Neurology

PORTUGAL

CENTRO
COIMBRA

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

PORTUGAL

SUL
LISBOA

Pituitary tumors national registry
Hospital Egas Moniz
Serviço de Endocrinologia

SPAIN

Castilla - León
SALAMANCA

National DNA Bank: Rare diseases sample collection
Centro de Investigación del Cáncer (USAL-CSIC)
Banco Nacional de ADN

SPAIN

Cataluña
BARCELONA

ERCUSYN: European registry on Cushing's syndrome
Hospital de la Santa Creu i Sant Pau
Servicio de Endocrinología y Nutrición

SPAIN

Cataluña
BARCELONA

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

SPAIN

Madrid
MADRID

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

SWITZERLAND

Suisse Alémanique
BASEL

SACHER: Swiss Adult Congenital HEart disease Registry
Universitätsspital Basel
Cardiology Department

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

UK10K_RARE_THYROID - Congenital Hypothyroidism variant database
Addenbrooke's Hospital
University of Cambridge Metabolic Research Laboratories

UNITED KINGDOM

Glasgow
GLASGOW

I-DSD: International Disorders of Sex Development registry
Royal Hospital For Children, NHS Greater Glasgow & Clyde
Child Health, School of Medicine

UNITED KINGDOM

Greater London
LONDON

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

UNITED KINGDOM

Tyne & Wear
NEWCASTLE UPON TYNE

UK Myotonic dystrophy type I patient registry (part of the TREAT-NMD network)
Newcastle upon Tyne Hospitals NHS Trust
John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine

UNITED STATES

New York
NEW YORK

International Rare Genetic Steroid Disorders Consortium (RGSDC) registry
The Mount Sinai School of Medicine
Department of pediatric endocrinology

DENMARK

Hovedstaden
COPENHAGEN

Nordic Database for Rare Diseases
Rigshospitalet
Department of Clinical Genetics and Paediatrics

FRANCE

AUVERGNE-RHONE-ALPES
ADDRESS: NOT PROVIDED - FR

FRANCE

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

FRANCE

GRAND-EST
STRASBOURG

Mutation registry of the Coffin-Lowry syndrome
CHU de Strasbourg - Hôpital Civil
Laboratoire de diagnostic génétique

FRANCE

ILE-DE-FRANCE
LE KREMLIN-BICÊTRE

Funded by an IRDiRC memberRaDiCo-IDMet: National and European cohort on Imprinting Disorders and their metabolic consequences
CHU Paris-Sud - Hôpital de Bicêtre
Service d'Endocrinologie et Diabète de l'Enfant

FRANCE

ILE-DE-FRANCE
PARIS

European LeukoDataBase
CHU Paris - Hôpital Robert Debré
Centre de référence des leucodystrophies

FRANCE

ILE-DE-FRANCE
PARIS

Funded by an IRDiRC memberRaDiCo-IDMet: National and European cohort on Imprinting Disorders and their metabolic consequences
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service Explorations fonctionnelles Endocriniennes

FRANCE

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

FRANCE

OCCITANIE
MONTPELLIER

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

FRANCE

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

FRANCE

PAYS DE LA LOIRE
ANGERS

French registry of generalized resistance to thyroid hormone
CHU d'Angers
Département d'endocrinologie, diabétologie et nutrition

GERMANY

Baden-Württemberg
FREIBURG

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

GERMANY

Baden-Württemberg
FREIBURG

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

GERMANY

Baden-Württemberg
TÜBINGEN

National MRKH patient registry
Universitäts-Frauenklinik Tübingen
Frauenklinik

GERMANY

Bayern
MÜNCHEN

GERMANY

Bayern
WÜRZBURG

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

GERMANY

Bayern
WÜRZBURG

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

GERMANY

Bayern
WÜRZBURG

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

GERMANY

Berlin
BERLIN

SSFA-database: Sequence-Structure-Function-Analysis of Glycoprotein Hormone Receptors
Leibniz-Institut für Molekulare Pharmakologie
Structural Bioinformatics and Protein Design

GERMANY

Niedersachsen
MEPPEN

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

GERMANY

Sachsen
LEIPZIG

TSH receptor mutation database
Universitätsklinikum Leipzig AöR
Klinik und Poliklinik für Endokrinologie und Nephrologie

GERMANY

Schleswig-Holstein
KIEL

Registry for Merkel Cell Carcinoma
Universitäts-Hautklinik Kiel
Arbeitsgruppe Dermatologische Onkologie

ITALY

LAZIO
ROMA

Italian registry of Growth Hormone
ISS - Istituto Superiore di Sanità
Dipartimento di Biologia Cellulare e Neuroscienze

ITALY

LIGURIA
GENOVA

MODY: Italian registry of maturity onset diabetes of the young
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Laboratorio di Diabetologia

ITALY

PUGLIA
SAN GIOVANNI ROTONDO

Regional Registry Rare Diseases of Puglia Region (SIMaRRP)
Fondazione IRCCS Ospedale Casa Sollievo della Sofferenza
U.O.S. di Endocrinologia

ITALY

PUGLIA
SAN GIOVANNI ROTONDO

Genetic Biobank from patients with Williams-Beuren syndrome and other genomic disorders
IRCCS Ospedale Casa Sollievo della Sofferenza -Poliamb. Giovanni Paolo II
U.O.C. Genetica Medica

ITALY

TOSCANA
FIRENZE

Italian register multiple endocrine neoplasia
Azienda Ospedaliero Universitaria Careggi
S.O.D. Malattie del Metabolismo Minerale ed Osseo

ITALY

VENETO
PADOVA

NETHERLANDS

Gelderland
NIJMEGEN

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

NETHERLANDS

Noord-Brabant
EINDHOVEN

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

NETHERLANDS

Noord-Holland
AMSTERDAM

Biobank CEEx study (fibroblasts)
Amsterdam UMC, locatie AMC
Kinderpolikliniek Klinische Genetica

NETHERLANDS

Noord-Holland
AMSTERDAM

Biobank CEEx study (fibroblasts)
Amsterdam UMC, locatie AMC
Polikliniek Algemene Kindergeneeskunde

NETHERLANDS

Zuid-Holland
LEIDEN

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

POLAND

Lodz
LODZ

Registry for Wolfram syndrome, Astrom syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes contributing do EURO-WABB
Uniwersytecki Szpital Kliniczny nr 4 im. Marii Konopnickiej
Pracownia Immunopatologii I Genetyki - Laboratory of Immunopathology and Genetics

POLAND

Lodz
LODZ

Registry for Wolfram syndrome, Astrom syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes contributing do EURO-WABB
Uniwersytecki Szpital Kliniczny nr 4 im. Marii Konopnickiej
Departament of Pediatrics, Oncology, Hematology and Diabetology

SPAIN

Andalucía
SEVILLA

Spanish Registry of Cushing Syndrome - contributes to ERCUSYN
IBIS - Instituto de Biomedicina de Sevilla
Grupo de enfermedades endocrinas

SPAIN

Asturias
OVIEDO

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

SPAIN

Asturias
OVIEDO

Funded by an IRDiRC memberRenalTube: Database of patients with primary tubulopathies
Hospital Universitario Central de Asturias
Servicio de Pediatría

SPAIN

Cataluña
L'HOSPITALET DE LLOBREGAT

REWBA: Spanish Registry of Wolfram, Bardet-Biedl and Alstrom syndromes
IDIBELL - Instituto de Investigación Biomédica de Bellvitge
Grupo de Genética molecular humana

SPAIN

Cataluña
L'HOSPITALET DE LLOBREGAT

EURO-WABB: An EU Rare Diseases Registry for Wolfram Syndrome, Alstrom Syndrome, Bardet-Biedl Syndrome and Other Rare Diabetes Syndromes - ES
IDIBELL - Instituto de Investigación Biomédica de Bellvitge
Grupo de Genética molecular humana

SPAIN

Galicia
VIGO

REWBA: Spanish Registry of Wolfram, Bardet-Biedl and Alstrom syndromes
Universidade de Vigo
Departamento de Bioquímica, Genética e Inmunología

SWITZERLAND

Suisse Romande
LAUSANNE

Funded by an IRDiRC memberCOST Action BM1105 Patient Registry - GnRH Network
Centre Hospitalier Universitaire Vaudois CHUV
Endocrinology, Diabetes, & Metabolism Service

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

European Prader-Willi syndrome database
Developmental Psychiatry - University of Cambridge
Learning Disabilities Research Group

UNITED KINGDOM

Cambridgeshire
HINXTON

UK10K_RARE_SIR - The Severe Insulin Resistance (SIR) variant database
Wellcome Trust Sanger Institute
UK10K - Rare Genetic Variants in Health and Disease

UNITED KINGDOM

Hampshire
SOUTHAMPTON

DRN 377: Clinical Register for Transient Neonatal Diabetes
Faculty of Medicine - University of Southampton
Human Genetics

UNITED KINGDOM

Oxfordshire
OXFORD

UK10K RARE CHD - Congenital heart disease variant database
The Wellcome Trust Centre for Human Genetics
Division of Cardiovascular Medicine

UNITED KINGDOM

West Midlands
BIRMINGHAM

FRANCE

ILE-DE-FRANCE
PARIS

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

FRANCE

ILE-DE-FRANCE
PARIS

Registre de mutations d'UMD LMNA (Lamin A/C)
Institut de Myologie - Hôpital Pitié-Salpêtrière
Centre de Recherche en Myologie

UNITED KINGDOM

Greater London
LONDON

UK10K_RARE_HYPERCHOL - Familial Hypercholesterolemia variant database
UCL University College London, Bloomsbury Campus - Rayne Building
Centre for Cardiovascular Genetics

AUSTRIA

STEIERMARK
GRAZ

Styrian registry of congenital anomalies - contributes to the EUROCAT network
Medizinische Universität Graz
Forschungsverein zur Registrierung steirischer Geburtsfehlbildungen

BELGIUM

ANTWERPEN
ANTWERPEN

Antwerpen registry of congenital anomalies - contributes to the EUROCAT network
Provinciaal Instituut voor Hygiëne (PIH)- Antwerpen
EUROCAT Belgium_Antwerpen

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian sickle cell anemia registry
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Service d'hémato-oncologie, d'immunologie et de rhumatologie pédiatrique

BELGIUM

HAINAUT
GOSSELIES

Hainaut and Namur registry of congenital anomalies - contributes to the EUROCAT network
Institut de Pathologie et de Génétique
Département de Génétique Clinique - Institut de Pathologie et de Génétique (IPG)

DENMARK

Syddanmark
ODENSE

Funen county registry of congenital anomalies - contributes to the EUROCAT network
University of Southern Denmark
Epidemiology department

FINLAND

Finland
HELSINKI

Register of Congenital Malformations, Epämuodostumarekisteri
Terveyden ja hyvinvoinnin laitos (THL)
Finnish Institute for Health and Welfare (THL)

FRANCE

AUVERGNE-RHONE-ALPES
CLERMONT-FERRAND

Auvergne registry of congenital anomalies - contributes to the EUROCAT network
CHU de Clermont-Ferrand - Hôpital d'Estaing
Service de génétique médicale

FRANCE

AUVERGNE-RHONE-ALPES
LYON

Rhône-Alpes registry of congenital anomalies - contributes to the EUROCAT network
Registre des Malformations en Rhône Alpes
Registre des Malformations en Rhône Alpes REMERA

FRANCE

GRAND-EST
REIMS

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

FRANCE

GRAND-EST
STRASBOURG

Funded by an IRDiRC memberRaDiCo-COBBALT: National cohort on Bardet-Bield syndrome and Alström syndrome
CHU de Strasbourg - Hôpital de Hautepierre
Service de génétique médicale

FRANCE

ILE-DE-FRANCE
CRÉTEIL

French sickle cell anemia registry
CHU Henri Mondor
Unité des Maladies Génétiques du Globule Rouge

FRANCE

ILE-DE-FRANCE
PARIS

FRANCE

OUTRE-MER
FORT DE FRANCE

French West Indies registry of congenital anomalies - contributes to the EUROCAT network
CHU de Martinique - Maison de la Femme, de la Mère et de l'Enfant
Centre Pluridisciplinaire de Diagnostic Prénatal (CPDP)

FRANCE

OUTRE-MER
SAINT-PIERRE

La Réunion Fench Island registry of congenital anomalies - contributes to the EUROCAT network
CHU de la Réunion - GH Sud Réunion - Saint-Pierre
Service de Génétique Médicale

GERMANY

Bayern
BAMBERG

German acromegaly registry
Endokrinologie im Zentrum

GERMANY

Hessen
GIEßEN

Mutation Database Retina International: Bardet-Biedl syndrome 2 (BBS2)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde

GERMANY

Hessen
GIEßEN

Mutation Database Retina International: McKusick-Kaufman Gene (MKKS)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde

GERMANY

Hessen
GIEßEN

Mutation Database Retina International: Bardet-Biedl Syndrome Type 4 Gene (BBS4)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde

GERMANY

Hessen
GIEßEN

Mutation Database Retina International: Bardet-Biedl Syndrome Type 1 Gene (BBS1)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde

GERMANY

Hessen
GIEßEN

Mutation Database Retina International: Bardet-Biedl Syndrome Type 7 Gene (BBS7)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde

GERMANY

Rheinland-Pfalz
MAINZ

Mainz registry of congenital anomalies - contributes to the EUROCAT network
Universitätsmedizin Mainz
Geburtenregister Mainzer Modell

GERMANY

Sachsen-Anhalt
MAGDEBURG

Centre Saxony-Anhalt registry of congenital anomalies - contributes to the EUROCAT network
Universitätsklinikum Magdeburg A.ö.R
MONZ - Fehlbildungsmonitoring Sachsen-Anhalt

IRELAND

County Cork
CORK

IRELAND

County Dublin
DUBLIN

Dublin registry of congenital anomalies - contributes to the EUROCAT network
Dr. Steeven's Hospital
HSE Registry of Congenital Anomalies (East)

IRELAND

County Kilkenny
KILKENNY

South East of Ireland registry of congenital anomalies - part of BINOCAR and EUROCAT network
Health Service Executive South SE
South East of Ireland registry of congenital anomalies

ITALY

CAMPANIA
BENEVENTO

Campania registry of congenital anomalies - contributes to the EUROCAT network
A.O.R.N. "Gaetano Rummo"
U.O.C. di Genetica Medica

ITALY

SICILIA
CATANIA

ISMAC: Sicilian registry of congenital anomalies - contributes to the EUROCAT network
ASMAC
Associazione per la Prevenzione Sociale e per il Trattamento delle Malformazioni Congenite

ITALY

TOSCANA
PISA

Tuscan Registry of Congenital Anomalies
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Unità di Ricerca Epidemiologia Ambientale e Registri di Patologia

ITALY

UMBRIA
PERUGIA

Italian Biobanks patients Addison's Disease
Università degli Studi di Perugia
Dipartimento di Scienze Farmaceutiche

ITALY

VENETO
PADOVA

North-East of Italy registry of congenital anomalies - contributes to the EUROCAT network
Azienda Ospedaliera di Padova
U.O.C. Genetica Clinica ed Epidemiologica

MALTA

MALTA
G'MANGIA

MALTA CONGENITAL ANOMALIES REGISTRY (MCAR) - it contributes to EUROCAT
Ministry for Health
Directorate of Health Information and Research

NETHERLANDS

Gelderland
NIJMEGEN

Radboud Biobank - Iron Biobank (cell lines, DNA, serum and urine)
Radboudumc - Radboud universitair medisch centrum
Translationeel Metabool Laboratorium

NETHERLANDS

Groningen
GRONINGEN

EUROCAT Northern Netherlands - contributes to the international EUROCAT network
UMCG - Universitair Medisch Centrum Groningen
Afdeling Genetica

POLAND

Poznan
POZNAN

PRCM: Polish registry of congenital malformations - contributes to the EUROCAT network
Uniwersytet Medyczny im. Karola Marcinkowskiego w Poznaniu
Zaklad Genetyki Medycznej

PORTUGAL

SUL
LISBOA

RENAC - Registo Nacional de Anomalias Congénitas (contribui para a rede EUROCAT)
Instituto Nacional de Saúde Dr. Ricardo Jorge - Lisboa
Departamento de Epidemiologia

SPAIN

País Vasco
VITORIA-GASTEIZ

RACAV: Registry of congenital anomalies of the Basque Country (Spain) - contributes to the EUROCAT network
Gobierno Vasco - Departamento de Sanidad y Consumo
Gobierno Vasco. Departamento de Salud

SWITZERLAND

Suisse Alémanique
BERN

Swiss Paediatric Renal Registry
Institute of Social and Preventive Medicine (ISPM)

SWITZERLAND

Suisse Romande
LAUSANNE

EUROCAT VAUD Switzerland - Registry of congenital malformations of canton Vaud
Centre Hospitalier Universitaire Vaudois CHUV
Département Femme-Mère-Enfant - Maternité

UNITED KINGDOM

Greater Manchester
MANCHESTER

UK national Acromegaly patient register
Christie Hospital
Department of Endocrinology

UNITED KINGDOM

Tyne & Wear
NEWCASTLE UPON TYNE

EURADRENAL: European patient registry on autoimmune Addison's disease (sera, DNA and RNA)
Institute of Genetic Medicine - International Centre for Life
Endocrine and Renal Genetics

UNITED KINGDOM

Tyne & Wear
NEWCASTLE UPON TYNE

EURADRENAL: European biobank on autoimmune Addison's disease (sera, DNA and RNA)
Institute of Genetic Medicine - International Centre for Life
Endocrine and Renal Genetics

Networks of registries and biobanks

SPAIN

Madrid
MADRID

SpainRDR: Spanish Rare Disease Registries Research Network (patient registries)
  • ISCIII - Instituto de Salud Carlos III
  • Instituto de Investigación de Enfermedades Raras
  • SWEDEN

    Skane
    LUND

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

    West Midlands
    BIRMINGHAM

    UNITED KINGDOM

    Antrim and Newtownabbey
    NEWTOWNABBEY