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Registries and Biobanks

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

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

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

GERMANY

Baden-Württemberg
HEIDELBERG

EXCITING Registry: Registry for Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases
Thoraxklinik-Heidelberg gGmbH
Abteilung für Pneumologie und Beatmungsmedizin

GERMANY

Bayern
MÜNCHEN

Kids Lung Register: International register and biobank for rare lung diseases
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Kinderlungenregister

GERMANY

Bayern
MÜNCHEN

European chILD-registry and biobank of the european network for children's interstitial lung diseases (chILD-EU).
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Kinderlungenregister

NETHERLANDS

Utrecht
NIEUWEGEIN

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

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

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Funded by an IRDiRC memberERN [ERN-LUNG] : ERN-LUNG POPULATION REGISTRY
European Commission
DG Research - Directorate General for Research

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Funded by an IRDiRC memberERN [ERN-LUNG] : REGISTRY WAREHOUSE - RD Registry Data Warehouse
European Commission
DG Research - Directorate General for Research

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)

GERMANY

Hessen
FRANKFURT AM MAIN

Funded by an IRDiRC memberERN [ERN-LUNG] : ERN-LUNG POPULATION REGISTRY
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Medizinische Klinik 1 - Pneumologie und Allergologie

GERMANY

Hessen
FRANKFURT AM MAIN

Funded by an IRDiRC memberERN [ERN-LUNG] : REGISTRY WAREHOUSE - RD Registry Data Warehouse
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Medizinische Klinik 1 - Pneumologie und Allergologie

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

ERN [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

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

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

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

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

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

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
University Hospitals Leuven - Gasthuisberg
Pediatric Rheumatology

BELGIUM

VLAAMS BRABANT
LEUVEN

Biobank of the pediatric granulomatous arthritis international registry
University Hospitals Leuven - 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: Registro di pazienti affetti da atrite giovanile idiopatica trattati con anti-TNF
IRCCS Ospedale Pediatrico Bambino Gesù - SEDE GIANICOLO
U.O. di Reumatologia

ITALY

LIGURIA
GENOVA

IPERN: Registro di pazienti affetti da atrite giovanile idiopatica trattati con 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

SPAIN

Madrid
MADRID

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