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

Registri and biobanche

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

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

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)

GERMANIA

Baden-Württemberg
HEIDELBERG

CERTAIN: Cooperative European Paediatric Renal Transplant Initiative registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg

GERMANIA

Baden-Württemberg
HEIDELBERG

Finanziato da un ente associato a IRDiRCERN [ERKNet] - ERKReg: The European Rare Kidney Disease Registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg

PAESI BASSI

Noord-Holland
AMSTERDAM

ESPN/ERA-EDTA Registry: European Registry for Children on Renal Replacement Therapy
Amsterdam UMC, locatie AMC
Afdeling Klinische Informatiekunde

REGNO UNITO; GRAN BRETAGNA

Avon
BRISTOL

UK renal rare disease biobank
Southmead Hospital
Academic Renal Unit

REGNO UNITO; GRAN BRETAGNA

West Midlands
BIRMINGHAM

UK Renal Rare Disease Registry (RaDaR) - Part of OXAL Europe
Birmingham Children's Hospital NHS Foundation Trust
Birmingham Children's Hospital

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

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

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 Extremeńo 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

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

SVIZZERA

Suisse Alémanique
BERN

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

SVIZZERA

Suisse Alémanique
ZÜRICH

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

AUSTRALIA

Victoria
MEKBOURNE

Thrombotic Thrombocytopenia Purpura / Thrombotic Microangiopathies Registry (TTP/TMA)
Monash University
Department of Epidemiology & Preventive Medicine

FRANCIA

ILE-DE-FRANCE
PARIS

Registry of the network studying thrombotic microangiopathies
CHU Paris Est - Hôpital Saint-Antoine
Service d'hématologie

GERMANIA

Niedersachsen
HANNOVER

Finanziato da un ente associato a IRDiRCNEOCYST: Biobank Early Onset Cystic Kidney Disease
CRC Hannover
Hannover Unified Biobank (HUB)

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

SVIZZERA

Suisse Romande
GENČVE

CAKUT cohort study - Geneva
Hôpital des Enfants - Hôpitaux Universitaires de Genčve HUG
Unité de néphrologie et métabolisme pédiatrique

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

EUNEFRON: registry of the European network for the study of orphan nephropathies
Cliniques universitaires Saint-Luc - UCLouvain
Laboratory of Nephrology

BELGIO

VLAAMS BRABANT
LEUVEN

ADPedKD - International, longitudinal registry including ADPKD patients followed up from childhood.
UZ Leuven - Campus Gasthuisberg
Referentiecentrum voor kindernefrologie

FRANCIA

GRAND-EST
STRASBOURG

Finanziato da un ente associato a IRDiRCRaDiCo-COBBALT: National cohort on Bardet-Bield syndrome and Alström syndrome
CHU de Strasbourg - Hôpital de Hautepierre
Service de génétique médicale

FRANCIA

ILE-DE-FRANCE
LE KREMLIN-BICĘTRE

Finanziato da un ente associato a IRDiRCRaDiCo-IDMet: National and European cohort on Imprinting Disorders and their metabolic consequences
Hôpital Bicętre, GHU APHP. Université Paris Saclay
Service d'Endocrinologie et Diabčte de l'Enfant

FRANCIA

ILE-DE-FRANCE
PARIS

Finanziato da un ente associato a IRDiRCRaDiCo-IDMet: National and European cohort on Imprinting Disorders and their metabolic consequences
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service Explorations fonctionnelles Endocriniennes

GERMANIA

Hamburg
HAMBURG

GERMANIA

Niedersachsen
HANNOVER

GERMANIA

Nordrhein-Westfalen
AACHEN

Mutation Database Autosomal Recessive Polycystic Kidney Disease (ARPKD/PKHD1)
Universitätsklinikum Aachen
Institut für Humangenetik

GERMANIA

Nordrhein-Westfalen
BONN

GERMANIA

Nordrhein-Westfalen
KÖLN

ARegPKD - International Registry Study on Autosomal Recessive Polycystic Kidney Disease
Universitätsklinikum Köln
Pädiatrische Nephrologie, Immunologie und Hypertensiologie

GERMANIA

Nordrhein-Westfalen
KÖLN

ADPedKD - International, longitudinal registry including ADPKD patients followed up from childhood.
Universitätsklinikum Köln
Pädiatrische Nephrologie, Immunologie und Hypertensiologie

GERMANIA

Nordrhein-Westfalen
MÜNSTER

Nephronophthisis registry for patients in germany, austria and switzerland
KfH Kuratorium für Dialyse und Nierentransplantation e.V.
KfH-Nierenzentrum für Kinder und Jugendliche

GERMANIA

Nordrhein-Westfalen
MÜNSTER

Nephronophthisis registry for patients in germany, austria and switzerland
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Allgemeine Pädiatrie

GERMANIA

Sachsen
DRESDEN

Registry for C3 Glomerulopathy and Immune complex-mediated MPGN
Universitätsklinikum Carl Gustav Carus an der TU Dresden
Medizinische Klinik und Poliklinik III - Nephrologie

ITALIA

LOMBARDIA
MILANO

TTP: Registro Internazionale sulla Porpora Trombotica Trombocitopenica
Fondazione IRCCS Ca' Granda - Ospedale Maggiore Policlinico
Laboratorio di Patologie Molecolari Applicate alla Clinica

ITALIA

LOMBARDIA
RANICA

Finanziato da un ente associato a IRDiRCRegistro Internazionale delle forme ricorrenti e familiari di sindrome emolitico uremica/porpora trombotica trombocitopenica
Istituto di Ricerche Farmacologiche Mario Negri
Centro di Ricerche Cliniche per le Malattie Rare

ITALIA

LOMBARDIA
RANICA

Finanziato da un ente associato a IRDiRCRegistro Italiano della glomerulonefrite membranoproliferativa
Istituto di Ricerche Farmacologiche Mario Negri
Centro di Ricerche Cliniche per le Malattie Rare

ITALIA

VENETO
PADOVA

Registro per le sindromi di Wolfram, Alström , Bardet-Biedl e altre sindromi rare - afferisce al network EURO-WABB
Azienda Ospedaliera di Padova
Laboratorio Endocrino Metabolico - Clinica Medica 3

PAESI BASSI

Gelderland
NIJMEGEN

PAESI BASSI

Zuid-Holland
ROTTERDAM

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

POLONIA

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

POLONIA

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

REGNO UNITO; GRAN BRETAGNA

Cambridgeshire
CAMBRIDGE

The Alström Syndrome UK (ASUK) Tissue Bank
Addenbrooke's Hospital
University of Cambridge Metabolic Research Laboratories

REGNO UNITO; GRAN BRETAGNA

East Sussex
BRIGHTON

TuberOus SClerosis registry to increase disease Awareness (TOSCA)
Royal Sussex County Hospital
Sussex Kidney Unit

REGNO UNITO; GRAN BRETAGNA

Greater London
LONDON

UK Thrombotic Thrombocytopenia Purpura (UKTTP) Registry
UCL University College London, Bloomsbury Campus
Haemostasis Research Unit

REGNO UNITO; GRAN BRETAGNA

West Midlands
BIRMINGHAM

SPAGNA

Asturias
OVIEDO

Finanziato da un ente associato a IRDiRCRenalTube: Database of patients with primary tubulopathies
Hospital Universitario Central de Asturias
Servicio de Pediatría

SPAGNA

Cataluńa
BARCELONA

SPAGNA

Cataluńa
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

SPAGNA

Cataluńa
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

SPAGNA

Galicia
VIGO

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

SPAGNA

Madrid
MADRID

ADPKD registry: Spanish registry for autosomal dominant polycystic kidney disease
Hospital Universitario Fundación Jiménez Díaz
Servicio de Nefrología e Hipertensión

SVIZZERA

Suisse Alémanique
BERN

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

UNGHERIA

Dél-Dunántúl
PECS

Tuberous sclerosis biobank
Clinical Center - University of Pécs
Department of Medical Genetics

AUSTRIA

WIEN
WIEN

Upshaw-Schulman-Syndrome registry
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie

AUSTRIA

WIEN
WIEN

International aHUS registry
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie

BELGIO

OOST-VLAANDEREN
GENT

I-DSD: International Disorders of Sex Development registry - Flanders contribution (Ghent university hospital)
Ghent University Hospital - UZ Gent
Het Centrum voor geslachtsontwikkeling [DSD team] - UZ Gent

CANADA

Colombie-Britannique
VANCOUVER

Glomerulonephritis Registry
Centre for Health Evaluation and Outcome Sciences (CHEOS)
Department of Nephrology

DANIMARCA

Hovedstaden
COPENHAGEN

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

FRANCIA

AUVERGNE-RHONE-ALPES
ADDRESS: NOT PROVIDED - FR

The global aHUS Registry
Institution: Information not provided - FR

FRANCIA

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

FRANCIA

CENTRE-VAL DE LOIRE
TOURS

NF-France: genotype/phenotype database on neurofibromatosis 1
CHRU de Tours - Hôpital Clocheville
Pôle Enfants - Neuropédiatrie et handicaps

FRANCIA

ILE-DE-FRANCE
CRÉTEIL

NF-France: genotype/phenotype database on neurofibromatosis 1
Hôpitaux Universitaires Henri Mondor
Service de dermatologie

FRANCIA

ILE-DE-FRANCE
PARIS

French Registry of Atypical Hemolytic Uremic Syndrome (aHUS) in Children
CHU Paris IdF Ouest - HEGP Hôpital Européen Georges Pompidou
Laboratoire d'Immunologie biologique

FRANCIA

ILE-DE-FRANCE
PARIS

PHA1-NET: PseudoHypoAldosteronism type 1 cohort
CHU Paris IdF Ouest - HEGP Hôpital Européen Georges Pompidou
Service de génétique

FRANCIA

ILE-DE-FRANCE
PARIS

FRANCIA

ILE-DE-FRANCE
PARIS

FRANCIA

PAYS DE LA LOIRE
ANGERS

PXE Biobank (Plasma, serum, DNA, skin fibroblasts)
CHU d'Angers
Service de dermatologie et vénéréologie

GERMANIA

Berlin
BERLIN

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

GERMANIA

Hamburg
HAMBURG

Registry for Patients with WT1 Mutation Associated Diseases
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

GERMANIA

Niedersachsen
GÖTTINGEN

European Alport registry
Universitätsmedizin Göttingen
ZSEG - Zentrum für seltene Erkrankungen Göttingen

GERMANIA

Nordrhein-Westfalen
KÖLN

Finanziato da un ente associato a IRDiRCThe FOrMe Registry : The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry
Universitätsklinikum Köln
Klinik II für Innere Medizin - Nephrologie, Rheumatologie, Diabetologie und allgemeine Innere Medizin

GERMANIA

Sachsen
LEIPZIG

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

IRLANDA

County Dublin
DUBLIN

Finanziato da un ente associato a IRDiRCIrish Registry for homocystinurias and methylation defects - contributes to E-HOD
Children's Health Ireland @ Temple Street
National Centre for Inherited Metabolic Disorders

IRLANDA

County Dublin
DUBLIN

National Haemophilia Register - Ireland
St James's Hospital
National Centre for Hereditary Coagulation Disorders Registry

ITALIA

EMILIA ROMAGNA
MODENA

Registro Italiano dei pazienti e delle famiglie affetti da Pseudoxanthoma elasticum
Universitŕ degli Studi di Modena e Reggio Emilia
LabGen - Laboratorio Sequenziamento Genomico

ITALIA

LIGURIA
GENOVA

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

ITALIA

LOMBARDIA
PAVIA

Registro Italiano della malattia MYH9-correlata
Fondazione IRCCS Policlinico San Matteo
Clinica Medica III

ITALIA

PUGLIA
SAN GIOVANNI ROTONDO

Biobanca genetica di pazienti con Sindrome di Williams-Beuren ed altri disordini genomici
IRCCS Ospedale Casa Sollievo della Sofferenza -Poliamb. Giovanni Paolo II
U.O.C. Genetica Medica

ITALIA

TOSCANA
SIENA

Registro italiano della sindrome di Alport
Azienda Ospedaliera Universitaria Senese - Policlinico Santa Maria alle Scotte
U.O.C. di Genetica Medica

ITALIA

VENETO
PADOVA

Registro Nord-Est Italia delle Neurofibromatosi
Azienda Ospedaliera di Padova
U.O.C. Genetica Clinica ed Epidemiologica

PAESI BASSI

Gelderland
NIJMEGEN

AGORA: biobank (DNA) for congenital anomalies and childhood cancer
Radboudumc - Radboud universitair medisch centrum
Afdeling Kinderurologie

PAESI BASSI

Gelderland
NIJMEGEN

AGORA: biobank (DNA) for congenital anomalies and childhood cancer
Radboudumc - Radboud universitair medisch centrum
Afdeling Health Evidence

PAESI BASSI

Gelderland
NIJMEGEN

Finanziato da un ente associato a IRDiRCMembranous Nephropathy Registry
Radboudumc - Radboud universitair medisch centrum
Afdeling Nierziekten

PAESI BASSI

Noord-Holland
AMSTERDAM

REGNO UNITO; GRAN BRETAGNA

Cheshire
KNUTSFORD

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

Castilla - León
SALAMANCA

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

SPAGNA

Madrid
MADRID

aHUS/C3G: Atypical Hemolytic Uremic Syndrome (aHUS) and C3 Glomerulopathy (C3G) Database
Centro de Investigaciones Biológicas (CSIC)
Departamento de Medicina Celular y Molecular

STATI UNITI

New York
NEW YORK

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

SVEZIA

Region Skĺne
LUND

SMARCAL1base: Mutation registry for Schimke immuno-osseous dysplasia
Lund University
Department of Experimental Medical Science

SVIZZERA

Suisse Alémanique
BASEL

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

SVIZZERA

Suisse Alémanique
BERN

Hereditary TTP Registry
University Hospital Inselspital
Department of Hematology and Central Hematology Laboratory

TURCHIA

TURKEY
ANKARA

Turkish pediatric atypical hemolytic uremic syndrome registry
Hacettepe University Faculty of Medicine
Department of Pediatrics Nephrology and Rheumatology

UNGHERIA

Dél-Dunántúl
PECS

Neurofibromatosis type 1 biobank
Clinical Center - University of Pécs
Department of Medical Genetics

UNGHERIA

Közép-Magyarország
BUDAPEST

National NF Register
Nemzeti NF Regiszter
NF Magyarorszag

AUSTRIA

STEIERMARK
GRAZ

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

AUSTRIA

TIROL
INNSBRUCK

Innsbruck registry for Adamantiades-Behcet disease: Retrospective and prospective data collection
Medizinische Universität Innsbruck
Universitätsklinik für Innere Medizin II

BELGIO

ANTWERPEN
ANTWERPEN

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

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

The Belgian Systemic Sclerosis Cohort - BSSC
Cliniques universitaires Saint-Luc - UCLouvain
Service de rhumatologie

BELGIO

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)

DANIMARCA

Syddanmark
ODENSE

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

FINLANDIA

Finland
HELSINKI

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

FRANCIA

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

FRANCIA

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

FRANCIA

BRETAGNE
RENNES

FRANCIA

ILE-DE-FRANCE
LE KREMLIN-BICĘTRE

Establishment of children and adolescents cohort in Behcet disease in France
CHU Paris-Sud - Hôpital de Bicętre
Service de Rhumatologie pédiatrique

FRANCIA

ILE-DE-FRANCE
LE KREMLIN-BICĘTRE

DNA bank for child's Behcet disease in France
CHU Paris-Sud - Hôpital de Bicętre
Service de Rhumatologie pédiatrique

FRANCIA

ILE-DE-FRANCE
PARIS

FRANCIA

ILE-DE-FRANCE
PARIS

Finanziato da un ente associato a IRDiRCRaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
APHP.Sorbonne Université, Hôpital de la Pitié-Salpętričre
Service de rhumatologie

FRANCIA

ILE-DE-FRANCE
PARIS

Registry for Patients with Digital Ulcers Associated with Systemic Sclerosis (DU/SSc)
CHU Paris-GH St-Louis Lariboisičre F.Widal - Hôpital Saint-Louis
MATHEC - Maladies Auto-Immunes et Thérapie Cellulaire

FRANCIA

ILE-DE-FRANCE
PARIS

European Society for Blood and Marrow Transplant Society Registry (EBMT registry)
CHU Paris-GH St-Louis Lariboisičre F.Widal - Hôpital Saint-Louis
MATHEC - Maladies Auto-Immunes et Thérapie Cellulaire

FRANCIA

ILE-DE-FRANCE
PARIS

Biological collection in sarcoidosis in France
CHU Paris-GH St-Louis Lariboisičre F.Widal - Hôpital Saint-Louis
Service de pneumologie

FRANCIA

ILE-DE-FRANCE
PARIS

French atypical sarcoďdosis clinical forms registry
CHU Paris-GH St-Louis Lariboisičre F.Widal - Hôpital Saint-Louis
Service de pneumologie

FRANCIA

ILE-DE-FRANCE
PARIS

Finanziato da un ente associato a IRDiRCRaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
Groupe hospitalier AP-HP.6 - Hôpital Tenon
Service de médecine interne

FRANCIA

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 Mčre et de l'Enfant
Centre Pluridisciplinaire de Diagnostic Prénatal (CPDP)

FRANCIA

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

GERMANIA

Baden-Württemberg
HEIDELBERG

Finanziato da un ente associato a IRDiRCPODONET: Registry for Steroid-Resistant Nephrotic Syndrome (SRNS) patients
Zentrum für Kinder- und Jugendmedizin - Angelika-Lautenschläger-Klinik
Klinik für Kinderheilkunde I - Sektion Pädiatrische Nephrologie

GERMANIA

Bayern
MÜNCHEN

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

GERMANIA

Hessen
GIEßEN

Giessen PNEUMObank
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen

GERMANIA

Nordrhein-Westfalen
KÖLN

Patient registry of the German Network for Systemic Scleroderma
Universitätsklinikum Köln
Koordinierungszentrale des DNSS

GERMANIA

Nordrhein-Westfalen
MÜNSTER

HUSEC reference strain collection
Universität Münster
Konsiliarlabor für Hämolytisch-Urämisches Syndrom (HUS)

GERMANIA

Rheinland-Pfalz
MAINZ

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

GERMANIA

Sachsen-Anhalt
DESSAU

German registry for Morbus Adamantiades-Behçet e.V.
Städtisches Klinikum Dessau
Deutsches Register Morbus Adamantiades-Behçet e.V.

GERMANIA

Sachsen-Anhalt
MAGDEBURG

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

GERMANIA

Schleswig-Holstein
KIEL

Finanziato da un ente associato a IRDiRCPOPGEN biobank
Christian-Albrechts-Universität zu Kiel -UKSH
Institut für Epidemiologie

IRLANDA

County Cork
CORK

IRLANDA

County Dublin
DUBLIN

Dublin registry of congenital anomalies - contributes to the EUROCAT network
Health Services Executive
HSE Registry of Congenital Anomalies (East)

IRLANDA

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

ITALIA

CAMPANIA
BENEVENTO

Registro Campano difetti congeniti- afferisce al network EUROCAT
A.O.R.N. "Gaetano Rummo"
U.O.C. di Genetica Medica

ITALIA

LAZIO
ROMA

FMF: Registro Italiano della febbre mediterranea familiare nei giovani
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Sezione Pediatrica

ITALIA

LAZIO
ROMA

Registro italiano di pazienti adulti affetti da febbre mediterranea familiare
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Centro delle Febbri Periodiche - Istituto di Medicina Interna

ITALIA

LAZIO
ROMA

Registro Italiano della Sindrome Emolitico-Uremica
ISS - Istituto Superiore di Sanitŕ
Centro Nazionale Malattie Rare

ITALIA

LOMBARDIA
RANICA

Registro della sindrome nefrosica steroido-resistente
Istituto di Ricerche Farmacologiche Mario Negri
Centro di Ricerche Cliniche per le Malattie Rare

ITALIA

SICILIA
CATANIA

ISMAC: Registro siciliano di anomalie congenite - afferisce al network EUROCAT
ASMAC
Associazione per la Prevenzione Sociale e per il Trattamento delle Malformazioni Congenite

ITALIA

SICILIA
MESSINA

Registro italiano della malattia di Behçet
A.O.U. Policlinico "G. Martino"
Ambulatorio di Immunologia e Reumatologia Pediatrica

ITALIA

TOSCANA
PISA

Registro Toscano Difetti Congeniti
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Unitŕ di Ricerca Epidemiologia Ambientale e Registri di Patologia

ITALIA

VENETO
PADOVA

Registro delle anomalie congenite in tutta l'area del nord-est Italia - afferisce al network EUROCAT
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

PAESI BASSI

Groningen
GRONINGEN

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

PAESI BASSI

Utrecht
NIEUWEGEIN

Finanziato da un ente associato a IRDiRCBiobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum

POLONIA

Poznan
POZNAN

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

PORTOGALLO

SUL
LISBOA

RENAC - Portuguese registry of congenital anomalies (contributes to the EUROCAT network)
Instituto Nacional de Saúde Dr. Ricardo Jorge - Lisboa
Departamento de Epidemiologia

REGNO UNITO; GRAN BRETAGNA

Greater London
LONDON

UK and Ireland Juvenile Dermatomyositis Cohort Biomarker Study and Repository
GOSH NHS Foundatin Trust
Juvenile Dermatomyositis Research Centre

REGNO UNITO; GRAN BRETAGNA

Greater London
LONDON

REGNO UNITO; GRAN BRETAGNA

Greater London
LONDON

UK and Ireland Juvenile Dermatomyositis Cohort Biomarker Study and Repository
The Institute of Child Health & The Division of Medicine, UCL
The Institute of Child Health & The Division of Medicine

REGNO UNITO; GRAN BRETAGNA

Hampshire
SOUTHAMPTON

WANDA - Wessex registry of antenatally detected anomalies - part of BINOCAR and EUROCAT network
Princess Anne Hospital
Paediatric Endocrinology and the Wessex Clinical Genetics Service

REGNO UNITO; GRAN BRETAGNA

Merseyside
LIVERPOOL

UK and Ireland Juvenile Dermatomyositis Cohort Biomarker Study and Repository
Alder Hey Children's Hospital
Department of Rheumatology

SVEZIA

Region Skĺne
LUND

C3base: Mutation registry for C3 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skĺne
LUND

CFHbase: Mutation registry for Factor H deficiency (previously known as HF1base)
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skĺne
LUND

CFIbase: Mutation registry for Factor I deficiency (previously known as IFbase)
Lund University
Department of Experimental Medical Science

SVIZZERA

Suisse Romande
LAUSANNE

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

TURCHIA

TURKEY
ISTANBUL

FRANCIA

ILE-DE-FRANCE
PARIS

BLAU registry: French pediatric granulomatous arthritis registry
Hôpital Necker-Enfants Malades
Service d'Immuno-hématologie pédiatrique - Rhumatologie

GERMANIA

Baden-Württemberg
FREIBURG

PSHN Registry - Purpura Schoenlein-Henoch-Nephritis registry of the German society for paediatric nephrology (GPN)
Zentrum für Kinder- und Jugendmedizin Freiburg
Sektion Kindernephrologie der Klinik für Allgemeine Kinder- und Jugendmedizin

GERMANIA

Niedersachsen
HANNOVER

Lupus nephritis registry (established by the german paediatric nephrology association)
Medizinische Hochschule Hannover
Klinik für Pädiatrische Nieren-, Leber- und Stoffwechselerkrankungen

IRLANDA

County Dublin
DUBLIN

The Irish Rare Kidney Disease Registry and Biobank
St James's Hospital
Trinity Health Kidney Centre - Trinity College Dublin

SPAGNA

Canarias
LAS PALMAS DE GRAN CANARIA

Spanish Rheumatology Society Lupus Registry
Hospital Universitario de Gran Canaria Dr. Negrín
Servicio de Reumatología

SVEZIA

Region Stockholm
SOLNA

SVIZZERA

Suisse Alémanique
BASEL

Swiss SLE Cohort Study
Universitätsspital Basel
Association of the Swiss SLE Cohort Study (ASSCS)

SVIZZERA

Suisse Romande
LAUSANNE

Swiss registries for Interstitial and Orphan Lung Diseases (SIOLD Registries)
Centre Hospitalier Universitaire Vaudois CHUV
Swiss registries for Interstitial and Orphan Lung Diseases

Network di registri and biobanche

REGNO UNITO; GRAN BRETAGNA

West Midlands
BIRMINGHAM

PAESI BASSI

Noord-Holland
AMSTERDAM

Finanziato da un ente associato a IRDiRCE-HOD - European network and registry for homocystinurias and methylation defects
  • Amsterdam UMC, locatie VUmc
  • Afdeling Interne Geneeskunde
  • ITALIA

    LIGURIA
    GENOVA

    EUROFEVER: PReS network europeo di registri sulle sindromi autoinfiammatorie in etŕ pediatrica
  • IRCCS Istituto G. Gaslini - Ospedale Pediatrico
  • U.O.C. di Pediatria II - I.A.S. Malattie Autoinfiammatorie
  • REGNO UNITO; GRAN BRETAGNA

    Antrim and Newtownabbey
    NEWTOWNABBEY

    IRLANDA

    County Dublin
    DUBLIN

    UKIVAS - UK and Ireland registry of autoimmune vasculitides
  • St James's Hospital
  • Trinity Health Kidney Centre - Trinity College Dublin