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Gefinancierd door een IRDiRC-lid = Member of a ERN =

Registers en biobanken

BELGIË

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

CYPRUS

Cyprus
NICOSIA

Cyprian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Cyprus International Institute (CII) for the environment and public health
Department of environment and public health

DENEMARKEN

Hovedstaden
COPENHAGEN

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

DENEMARKEN

Hovedstaden
COPENHAGEN

DENEMARKEN

Jylland
AARHUS

Danish cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Aarhus Universitetshospital - Skejby
Pediatric department A - Center for Cystisk Fibrose

DUITSLAND

Hessen
GIEßEN

German cystic fibrosis registry - contributes to the EUROCARE CF registry
Kinderklinik des UKGM am Standort Gießen
Abteilung für Allgemeine Pädiatrie und Neonatologie

ESTLAND

Tartu
TARTU

Estonian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Centre of Clinical Genetics - Tartu University Hospital
Centre of Clinical Genetics - United Laboratories

FRANKRIJK

ILE-DE-FRANCE
PARIS

FRANKRIJK

ILE-DE-FRANCE
PARIS

FRANKRIJK

ILE-DE-FRANCE
PARIS

Gefinancierd door een IRDiRC-lidRaDiCo-PID: National cohort on Idiopathic Interstitial Pneumonia from infancy to elderly
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service de pneumologie pédiatrique

FRANKRIJK

ILE-DE-FRANCE
PARIS

French cystic fibrosis patient registry
Vaincre La Mucoviscidose

FRANKRIJK

OCCITANIE
MONTPELLIER

LSDB, locus specific database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire

FRANKRIJK

OCCITANIE
MONTPELLIER

Cohorte française de patients atteints de mucoviscidose et cohorte CFTR-RD
Institut Universitaire de Recherche Clinique EA 7402 Université de Montpellier
Laboratoire de Génétique de Maladies Rares

GRIEKENLAND

THESSALONIKI
THESSALONIKI

Greek cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Aristotle University of Thessaloniki - Ippokration General Hospital
4th Pediatric Department

HONGARIJE

Dél-Dunántúl
PECS

Cystic fibrosis biobank
Clinical Center - University of Pécs
Department of Medical Genetics

HONGARIJE

Közép-Magyarország
BUDAPEST

Hungarian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Department of Dermatology, Venereology and Dermatoncology, Semmelweis University
Department of pediatric pulmonary

IERLAND

County Dublin
DUBLIN

CFRI: The Cystic Fibrosis Registry of Ireland - contributes to the EUROCARE CF registry
University College Dublin
Cystic Fibrosis Registry of Ireland

ISRAËL

ISRAEL
KFAR SABA

ITALIË

EMILIA ROMAGNA
BOLOGNA

RIPID - Italian registry of diffuse infiltrative pneumopathies
Policlinico S. Orsola-Malpighi - Area S. Orsola
U.O. Pneumologia e Terapia Intensiva Respiratoria

ITALIË

LIGURIA
GENOVA

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

ITALIË

LOMBARDIA
MILANO

Italian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Istituto di Statistica Medica e Biometria ''G.A. Maccacaro''

KROATIË

CROATIA
ZAGREB

Croatian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Zagreb University Medical School
Department of pediatric gastroenterology and nutrition

LETLAND

LATVIA
RIGA

Latvian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Childrens University Hospital
Department of pneumology

LITOUWEN

SUDOVIA
KAUNAS

Lithuanian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Kaunas University of Medicine
Clinic of children diseases

LUXEMBURG

LUXEMBOURG
LUXEMBOURG

Luxembourgers cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Centre Hospitalier du Luxembourg
Département de pneumologie

NOORWEGEN

Østlandet
OSLO

Norwegian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Oslo University Hospital, Ullevaal
NSCF - Norsk senter for cystisk fibrose

NORTH MACEDONIA

NORTH MACEDONIA
SKOPJE

Macedonian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
St. Cyril and Methodius University - Faculty of medicine
Pediatric clinic

OOSTENRIJK

WIEN
WIEN

Austrian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Wilhelminenspital
Abteilung für Kinder- und Jugendheilkunde mit Ambulanz

POLEN

Poznan
POZNAN

Polish cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Uniwersytet Medyczny im. Karola Marcinkowskiego w Poznaniu
Zaklad Genetyki Medycznej

ROEMENIË

TIMIS
TIMISOARA

Romanian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Centrul National de Mucoviscidoza
Cystic fibrosis clinic

SERBIA

Serbia
BELGRADE

Serbian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Mother and Child Health Institute of Serbia "Dr Vukan Cupic"
Laboratory of medical Genetics

SLOVENIË

SLOVENIA
LJUBLJANA

Slovenian cystic fibrosis patient registry - contributes to the EUROCARE CF registry
University Medical Centre Ljubljana
Sluzba za pljucne bolezni, Pediatricna klinika

SLOWAKIJE

Bratislavsky kraj
BRATISLAVA

Slovak cystic fibrosis patient registry - contributes to the EUROCARE CF registry
University Hospital Bratislava, SGN Podunajske Biskupice
Slovak cystic fibrosis patient registry

SPANJE

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

SPANJE

Aragón
ZARAGOZA

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

SPANJE

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

SPANJE

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

SPANJE

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

SPANJE

Comunidad Valenciana
VALENCIA

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

SPANJE

Extremadura
MÉRIDA

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

SPANJE

Galicia
SANTIAGO DE COMPOSTELA

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

SPANJE

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

SPANJE

Madrid
MADRID

REHAP: Spanish Registry of Pulmonary Arterial Hypertension
Hospital Universitario 12 de Octubre
Unidad Multidisciplinar de Hipertensión Pulmonar

SPANJE

Madrid
MADRID

Gefinancierd door een IRDiRC-lidERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil

SPANJE

Madrid
MADRID

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

SPANJE

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

SPANJE

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

TSJECHIË

Capital City Prague
PRAHA

Czech cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Motol university hospital - 2nd Medical School Charles University Prague
National centre for diagnosis and treatment of cystic fibrosis

TURKIJE

TURKEY
ANKARA

Turkish cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Ankara University - Faculty of medicine
Division of Pediatric Molecular Pathology and Genetics

VERENIGD KONINKRIJK

Cambridgeshire
CAMBRIDGE

VERENIGD KONINKRIJK

Greater London
LONDON

BPOLD: British Paediatric Orphan Lung Disease Registry
GOSH NHS Foundatin Trust
Respiratory Medicine Group

VERENIGD KONINKRIJK

Lothian
EDINBURGH

BPOLD: British Paediatric Orphan Lung Disease Registry
Royal Hospital for Sick Children
Department of Respiratory, Sleep & General Medicine

VERENIGD KONINKRIJK

Lothian
EDINBURGH

Gefinancierd door een IRDiRC-lidChILD-EU Database and Observational Study; European Management Platform for Childhood Interstitial Lung Diseases
Royal Hospital for Sick Children
Department of Respiratory, Sleep & General Medicine

VERENIGD KONINKRIJK

Tayside
DUNDEE

English cystic fibrosis database
Ninewells Hospital and Medical School
Division Of Cardiovascular & Diabetes Medicine

ZWEDEN

Region Skåne
LUND

SPAHR: Swedish Pulmonary Arterial Hypertension Registry
Skånes Universitetssjukhus
Heart and Lung Division

ZWEDEN

Region Uppsala
UPPSALA

Swedish cystic fibrosis patient registry - contributes to the EUROCARE CF registry
Akademiska childrens hospital
Uppsala centrum för cystisk fibros

ZWITSERLAND

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

DUITSLAND

Baden-Württemberg
HEIDELBERG

NEDERLAND

Utrecht
NIEUWEGEIN

Gefinancierd door een IRDiRC-lidBiobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum

VERENIGD KONINKRIJK

Oxfordshire
OXFORD

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

BELGIË

OOST-VLAANDEREN
GENT

I-DSD: Internationale register voor aandoeningen van geslachtsontwikkeling -Vlaanderen bijdrage (UZ Gent)
Ghent University Hospital - UZ Gent
Het Centrum voor geslachtsontwikkeling [DSD team]

DUITSLAND

Bayern
MÜNCHEN

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

DUITSLAND

Hessen
GIEßEN

eurIPFreg: European idiopathic pulmonary fibrosis registry
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen

DUITSLAND

Hessen
GIEßEN

eurIPFbank: European idiopathic pulmonary fibrosis biobank
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen

DUITSLAND

Hessen
GIEßEN

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

DUITSLAND

Schleswig-Holstein
KIEL

Gefinancierd door een IRDiRC-lidPOPGEN biobank
Christian-Albrechts-Universität zu Kiel -UKSH
Institut für Epidemiologie

FRANKRIJK

AUVERGNE-RHONE-ALPES
BRON

French National Lymphangioleiomyomatosis Registry (RE-LAM-CE)
CHU de Lyon HCL - GH Est-Hôpital Louis Pradel
Service de pneumologie

FRANKRIJK

ILE-DE-FRANCE
PARIS

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

FRANKRIJK

ILE-DE-FRANCE
PARIS

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

NEDERLAND

Gelderland
NIJMEGEN

Gefinancierd door een IRDiRC-lidERN [GENTURIS] - GENTURIS registry: The ERN Genetic Tumour Risk Syndromes Registry
Radboudumc - Radboud universitair medisch centrum
Sectie Klinische Genetica

SPANJE

Galicia
LUGO

REPA: Spanish registry of alveolar proteinosis
Hospital Universitario Lucus Augusti
Servicio de Neumología

SPANJE

Madrid
COSLADA

Spanish registry of lymphangioleiomyomatosis (terminated)
Hospital Universitario del Henares
Servicio de Neumología

VERENIGD KONINKRIJK

Nottinghamshire
NOTTINGHAM

English registry for lymphangioleiomyomatosis
LAM Action Nottingham, Voluntary Action Centre
Division of Respiratory Medicine, Clinical Sciences Building

BELGIË

VLAAMS BRABANT
LEUVEN

Pediatric granulomatous arthritis international registry
UZ Leuven - Campus Gasthuisberg
Pediatric Rheumatology

BELGIË

VLAAMS BRABANT
LEUVEN

Biobank of the pediatric granulomatous arthritis international registry
UZ Leuven - Campus Gasthuisberg
Pediatric Rheumatology

DUITSLAND

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

DUITSLAND

Bayern
GARMISCH-PARTENKIRCHEN

German biobank for sytemic juvenile idiopathic arthritis (SoJIA) - subproject of AID-NET
Kinderklinik Garmisch-Partenkirchen gGmbH
Deutsches Zentrum für Kinder- und Jugendrheumatologie

DUITSLAND

Bayern
GAUTING

INSIGHTS-IPF Investigating Significant Health Trends in Idiopathic Pulmonary Fibrosis
Asklepios-Fachkliniken München-Gauting
Klinik für Pneumologie

DUITSLAND

Hamburg
HAMBURG

DUITSLAND

Hessen
GIEßEN

Mutation Database Retina International: ep-Gene (HPS1)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde

DUITSLAND

Hessen
GIEßEN

Mutation Database Retina International: Human light ear Gene (le, HPS4)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde

DUITSLAND

Niedersachsen
HANNOVER

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

FINLAND

Finland
HELSINKI

Finnish IPF registry
University of Helsinki
Institute of Clinical Medicine

FRANKRIJK

ILE-DE-FRANCE
BOBIGNY

Idiopathic pulmonary fibrosis: Cohort studies for evaluation of pronostic factors, therapeutic evaluation
CHU Paris Seine-Saint-Denis - Hôpital Avicenne
Service de Pneumologie

FRANKRIJK

ILE-DE-FRANCE
PARIS

French cohort of idiopathic pulmonary fibrosis
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service de pneumologie

FRANKRIJK

ILE-DE-FRANCE
PARIS

French biological collection of idiopathic pulmonary fibrosis
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service de pneumologie

FRANKRIJK

ILE-DE-FRANCE
PARIS

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

IERLAND

County Dublin
DUBLIN

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

ITALIË

LAZIO
ROMA

IPERN: Registry of JIA patients treated with anti-TNF
IRCCS Ospedale Pediatrico Bambino Gesù - SEDE GIANICOLO
U.O. di Reumatologia

ITALIË

LIGURIA
GENOVA

IPERN: Registry of JIA patients treated with anti-TNF
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O. Pediatria II

NEDERLAND

Noord-Holland
AMSTERDAM

Dutch patient registry for Niemann-Pick Disease Type B
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten

NEDERLAND

Noord-Holland
NAARDEN

PORTUGAL

SUL
LISBOA

Biobanco-IMM
Faculdade de Medicina da Universidade de Lisboa
Biobanco-IMM

SPANJE

Canarias
LAS PALMAS

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

VERENIGD KONINKRIJK

Tyne & Wear
NEWCASTLE UPON TYNE

The National Chronic Granulomatous Disease Registry
The Great North Children's Hospital, Royal Victoria Infirmary
Sir James Spence Institute of Child Health

VERENIGD KONINKRIJK

West Midlands
BIRMINGHAM

Gefinancierd door een IRDiRC-lidInternational Niemann-Pick Disease Registry
Queen Elizabeth Hospital
Inherited Metabolic Disorders

ZWEDEN

Region Skåne
LUND

ZWEDEN

Region Skåne
LUND

ZWEDEN

Region Skåne
LUND

ZWEDEN

Region Skåne
LUND

ZWITSERLAND

Suisse Alémanique
BERN

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

CANADA

Colombie-Britannique
VANCOUVER

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

DUITSLAND

Baden-Württemberg
TÜBINGEN

Niemann-Pick Type C Disease Gene Variation Database
Institut für Medizinische Genetik und angewandte Genomik Tübingen
Institut für Medizinische Genetik und angewandte Genomik

FRANKRIJK

ILE-DE-FRANCE
PARIS

Gefinancierd door een IRDiRC-lidRaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
APHP.Sorbonne Université, Hôpital de la Pitié-Salpêtrière
Service de rhumatologie

FRANKRIJK

ILE-DE-FRANCE
PARIS

Gefinancierd door een IRDiRC-lidRaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
Groupe hospitalier AP-HP.6 - Hôpital Tenon
Service de médecine interne

NEDERLAND

Noord-Holland
AMSTERDAM

Dutch patient registry for Niemann-Pick Disease Type C
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten

SPANJE

Asturias
OVIEDO

Gefinancierd door een IRDiRC-lidRenalTube: Database of patients with primary tubulopathies
Hospital Universitario Central de Asturias
Servicio de Pediatría

VERENIGD KONINKRIJK

Greater Manchester
MANCHESTER

Registry for Patients with Niemann-Pick Type C Disease
St Mary's Hospital
Manchester Cente for Genomic Medicine

Netwerken van registers en biobanken

DENEMARKEN

Midtjylland
KARUP

SPANJE

Madrid
MADRID

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

    Tayside
    DUNDEE

    EUROCARE CF: European cystic fibrosis registry
  • Ninewells Hospital and Medical School
  • Division Of Cardiovascular & Diabetes Medicine
  • ITALIË

    LIGURIA
    GENOVA

    EUROFEVER: PReS European network of registries for autoinflammatoy diseases in childhood
  • IRCCS Istituto G. Gaslini - Ospedale Pediatrico
  • U.O.C. di Pediatria II - I.A.S. Malattie Autoinfiammatorie