Orphanet: Search simple
x

Search for a registry/biobank

* (*) mandatory field

120 Result(s)

Sort by

Funded by an IRDiRC member = Member of a ERN =

Registries and Biobanks

AUSTRIA

WIEN
WIEN

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

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

CROATIA

CROATIA
ZAGREB

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

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

CZECH REPUBLIC

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

DENMARK

Hovedstaden
COPENHAGEN

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

DENMARK

Hovedstaden
COPENHAGEN

DENMARK

Jylland
AARHUS

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

ESTONIA

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

FRANCE

ILE-DE-FRANCE
PARIS

FRANCE

ILE-DE-FRANCE
PARIS

FRANCE

ILE-DE-FRANCE
PARIS

Funded by an IRDiRC memberRaDiCo-PID: National cohort on Idiopathic Interstitial Pneumonia from infancy to elderly
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service de pneumologie pédiatrique

FRANCE

ILE-DE-FRANCE
PARIS

French cystic fibrosis patient registry
Vaincre La Mucoviscidose

FRANCE

OCCITANIE
MONTPELLIER

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

FRANCE

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

GERMANY

Hessen
GIEßEN

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

GREECE

THESSALONIKI
THESSALONIKI

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

HUNGARY

Dél-Dunántúl
PECS

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

HUNGARY

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

IRELAND

County Dublin
DUBLIN

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

ISRAEL

ISRAEL
KFAR SABA

ITALY

EMILIA ROMAGNA
BOLOGNA

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

ITALY

LIGURIA
GENOVA

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

ITALY

LOMBARDIA
MILANO

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

LATVIA

LATVIA
RIGA

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

LITHUANIA

SUDOVIA
KAUNAS

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

LUXEMBOURG

LUXEMBOURG
LUXEMBOURG

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

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

NORWAY

Østlandet
OSLO

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

POLAND

Poznan
POZNAN

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

ROMANIA

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

SLOVAKIA

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

SLOVENIA

SLOVENIA
LJUBLJANA

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

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

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

SPAIN

Madrid
MADRID

Funded by an IRDiRC memberERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Uppsala
UPPSALA

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

SWITZERLAND

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

TURKEY

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

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

UNITED KINGDOM

Greater London
LONDON

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

UNITED KINGDOM

Lothian
EDINBURGH

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

UNITED KINGDOM

Lothian
EDINBURGH

Funded by an IRDiRC memberChILD-EU Database and Observational Study; European Management Platform for Childhood Interstitial Lung Diseases
Royal Hospital for Sick Children
Department of Respiratory, Sleep & General Medicine

UNITED KINGDOM

Tayside
DUNDEE

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

GERMANY

Baden-Württemberg
HEIDELBERG

NETHERLANDS

Utrecht
NIEUWEGEIN

Funded by an IRDiRC memberBiobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum

UNITED KINGDOM

Oxfordshire
OXFORD

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

BELGIUM

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]

FRANCE

AUVERGNE-RHONE-ALPES
BRON

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

FRANCE

ILE-DE-FRANCE
PARIS

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

FRANCE

ILE-DE-FRANCE
PARIS

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

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

Hessen
GIEßEN

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

GERMANY

Hessen
GIEßEN

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

GERMANY

Hessen
GIEßEN

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

GERMANY

Schleswig-Holstein
KIEL

Funded by an IRDiRC memberPOPGEN biobank
Christian-Albrechts-Universität zu Kiel -UKSH
Institut für Epidemiologie

NETHERLANDS

Gelderland
NIJMEGEN

Funded by an IRDiRC memberERN [GENTURIS] - GENTURIS registry: The ERN Genetic Tumour Risk Syndromes Registry
Radboudumc - Radboud universitair medisch centrum
Sectie Klinische Genetica

SPAIN

Galicia
LUGO

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

SPAIN

Madrid
COSLADA

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

UNITED KINGDOM

Nottinghamshire
NOTTINGHAM

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

BELGIUM

VLAAMS BRABANT
LEUVEN

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

BELGIUM

VLAAMS BRABANT
LEUVEN

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

FINLAND

Finland
HELSINKI

Suomalainen IPF-rekisteri, Finnish IPF registry
University of Helsinki
Institute of Clinical Medicine

FRANCE

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

FRANCE

ILE-DE-FRANCE
PARIS

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

FRANCE

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

FRANCE

ILE-DE-FRANCE
PARIS

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

GERMANY

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

GERMANY

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

GERMANY

Bayern
GAUTING

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

GERMANY

Hamburg
HAMBURG

GERMANY

Hessen
GIEßEN

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

GERMANY

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

GERMANY

Niedersachsen
HANNOVER

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

IRELAND

County Dublin
DUBLIN

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

ITALY

LAZIO
ROMA

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

ITALY

LIGURIA
GENOVA

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

NETHERLANDS

Noord-Holland
AMSTERDAM

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

NETHERLANDS

Noord-Holland
NAARDEN

PORTUGAL

SUL
LISBOA

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

SPAIN

Canarias
LAS PALMAS

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

SWITZERLAND

Suisse Alémanique
BERN

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

UNITED KINGDOM

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

UNITED KINGDOM

West Midlands
BIRMINGHAM

Funded by an IRDiRC memberInternational Niemann-Pick Disease Registry
Queen Elizabeth Hospital
Inherited Metabolic Disorders

CANADA

Colombie-Britannique
VANCOUVER

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

FRANCE

ILE-DE-FRANCE
PARIS

Funded by an IRDiRC memberRaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
APHP.Sorbonne Université, Hôpital de la Pitié-Salpêtrière
Service de rhumatologie

FRANCE

ILE-DE-FRANCE
PARIS

Funded by an IRDiRC memberRaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
Groupe hospitalier AP-HP.6 - Hôpital Tenon
Service de médecine interne

GERMANY

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

NETHERLANDS

Noord-Holland
AMSTERDAM

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

SPAIN

Asturias
OVIEDO

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

UNITED KINGDOM

Greater Manchester
MANCHESTER

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

Networks of registries and biobanks

DENMARK

Midtjylland
KARUP

SPAIN

Madrid
MADRID

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

    Tayside
    DUNDEE

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

    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