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Registries and Biobanks
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
ERN [ERN-LUNG] : REGISTRY WAREHOUSE - RD Registry Data Warehouse
European Commission
DG Research - Directorate General for Research
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
CRRD: Central Registry of Rare Diseases
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
ERN [ERN-LUNG] : REGISTRY WAREHOUSE - RD Registry Data Warehouse
Universitätsklinikum Frankfurt
ERN-LUNG Coordinating Center
ITALY
LAZIO
ROMA
RNMR: Italian National Rare Diseases Registry
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare
ITALY
TOSCANA
PISA
Tuscan Registry of Rare Diseases
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Fondazione Toscana Gabriele Monasterio
ITALY
VENETO
PADOVA
Rare Diseases Registry - Veneto Region
Azienda Ospedaliera di Padova
Coordinamento Malattie Rare Regione del Veneto
SPAIN
Andalucía
SEVILLA
Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Subdirección Técnica Asesora de Gestión de la Información
SPAIN
Aragón
ZARAGOZA
Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad
Servicio de Evaluación y Acreditación Sanitaria
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)
Generalitat Valenciana. Conselleria de Sanitat Universal i Salut Pública
Servicio de Estudios Epidemiológicos y Vigilancia de Enfermedades No Transmisibles
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 Atención Hospitalaria
SPAIN
Madrid
MADRID
RePER: Rare Diseases Patient Registry
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
RERNA: Population-based Rare Disease Registry of Navarre (Spain)
Instituto de Salud Pública y Laboral de Navarra
Observatorio de la Salud Comunitaria
SPAIN
País Vasco
BARAKALDO
Basque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco
SPAIN
País Vasco
VITORIA-GASTEIZ
Rare Diseases Registry of the Basque Country
Gobierno Vasco. Departamento de Salud
Registro de Enfermedades Raras de la Comunidad Autónoma de Euskadi
SWITZERLAND
Suisse Alémanique
BERN
Swiss Rare Disease Registry (SRSK)
Institute of Social and Preventive Medicine (ISPM)
SWITZERLAND
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry (SRSK)
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
UNITED STATES
South Dakota
SIOUX FALLS
CORDS Registry: Coordination of Rare Diseases at Sanford Registry
Sanford Research
Standford Research
FRANCE
ILE-DE-FRANCE
LE KREMLIN-BICÊTRE
French registry of rare pulmonary hypertension (HTAP)
APHP. Université Paris-Saclay, Hôpital Bicêtre
Service de pneumologie - Unité Pneumologie et soins intensifs pneumologiques
GERMANY
Bayern
MÜNCHEN
Kids Lung Register: International patient register for rare lung diseases
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Kinderlungenregister
GERMANY
Bayern
MÜNCHEN
chILD-EU-registry: European Patient Registry for Rare Lung Diseases in Children - contributes to eurILDreg (European ILD Registry and Biobank)
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Kinderlungenregister
GERMANY
Bayern
MÜNCHEN
Kids Lung Register: International biobank for rare lung diseases
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Kinderlungenregister
GERMANY
Bayern
MÜNCHEN
chILD-EU-registry: European Biobank for Rare Lung Diseases in Children - contributes to eurILDreg (European ILD Registry and Biobank)
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Kinderlungenregister
SPAIN
Madrid
MADRID
REHIPED: Spanish Registry for Pediatric Pulmonary Hypertension
Hospital Universitario Ramón y Cajal
Servicio de Cardiología Infantil
AUSTRIA
WIEN
WIEN
Austrian alpha-1 antitrypsin deficiency registry - contributes to the Alpha One International Registry (AIR)
Wilhelminenspital
2. Medizinische Abteilung mit Pneumologie mit Ambulanz, Pavillon 26
AUSTRIA
WIEN
WIEN
Austrian cystic fibrosis patient registry - contributes to the EUROCARE CF and ECFS registry
Wilhelminenspital
Abteilung für Kinder- und Jugendheilkunde mit Ambulanz
BELGIUM
ANTWERPEN
ANTWERPEN
Antwerp registry of congenital anomalies - contributes to the EUROCAT network
Provinciaal Instituut voor Hygiëne (PIH)- Antwerpen
EUROCAT Belgium_Antwerpen
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
EARCO Registry : Belgian contribution to the European Alpha-1 Research Collaboration Registry
Cliniques Universitaires de Bruxelles - Hôpital Erasme
Service de Pneumologie
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
EuRRECa: European Registries for Rare Endocrine Conditions - Belgian contribution (HUDERF)
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Unité d'endocrinologie - HUDERF
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
BCFR: Belgian Cystic Fibrosis patient Registry - contribution to the EUROCARE CF and the ECFS registries
Sciensano
Health Services Research - Rare Diseases
BELGIUM
HAINAUT
GOSSELIES
Hainaut and Namur registry of congenital anomalies - contribution to the EUROCAT network
Institut de Pathologie et de Génétique
Département de Génétique Clinique - Institut de Pathologie et de Génétique (IPG)
BELGIUM
OOST-VLAANDEREN
GENT
EARCO Registry : Belgian contribution to the European Alpha-1 Research Collaboration Registry
Ghent University Hospital - UZ Gent
Department of Pneumology / Dienst Longziekten - UZ Gent
BELGIUM
OOST-VLAANDEREN
GENT
I-DSD: International Disorders of Sex Development registry - BE - Flanders contribution (Ghent university hospital)
Ghent University Hospital - UZ Gent
Het Centrum voor geslachtsontwikkeling [DSD team] - UZ Gent
BELGIUM
VLAAMS BRABANT
LEUVEN
EARCO Registry : Belgian contribution to the European Alpha-1 Research Collaboration Registry
UZ Leuven - Campus Gasthuisberg
Pneumology department
CZECH REPUBLIC
Capital City Prague
PRAHA
Cystic Fibrosis Registry of the Czech Republic
University Hospital Motol
National centre for diagnosis and treatment of cystic fibrosis
DENMARK
Hovedstaden
COPENHAGEN
Nordic Database for Rare Diseases
Rigshospitalet
Department of Clinical Genetics and Paediatrics
FINLAND
Finland
HELSINKI
Register of Congenital Malformations, Epämuodostumarekisteri
Terveyden ja hyvinvoinnin laitos (THL)
Finnish Institute for Health and Welfare (THL)
FRANCE
AUVERGNE-RHONE-ALPES
BRON
French biobank in primary ciliary dyskinesia
CHU de Lyon HCL - GH Est
Laboratoire cardiogénétique - Malformations cardiaques congénitales
FRANCE
AUVERGNE-RHONE-ALPES
CLERMONT-FERRAND
CEMC-Auvergne - Center for the Study of Congenital Malformations in Auvergne - 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
BRETAGNE
RENNES
Brittany registry of congenital anomalies - contributes to the EUROCAT network
CHU de Rennes - Hôpital Pontchaillou
CHU Rennes
FRANCE
BRETAGNE
RENNES
ReMaBreizh: Registry of congenital malformations in Brittany
CHU de Rennes - Hôpital Pontchaillou
CHU Rennes
FRANCE
ILE-DE-FRANCE
PARIS
RaDiCo-DCP: National cohort on Primary Ciliary Dyskinesia (PCD) : Identification of specific severity criteria and phenotype-genotype correlation study
AP-HP.Sorbonne Université - Hôpital d'Enfants Armand-Trousseau
U.F Génétique Moléculaire
FRANCE
ILE-DE-FRANCE
PARIS
RaDiCo-PID: National cohort on Idiopathic Interstitial Pneumonia from infancy to elderly
AP-HP.Sorbonne Université - Hôpital d'Enfants Armand-Trousseau
Service de pneumologie pédiatrique
FRANCE
ILE-DE-FRANCE
PARIS
REMAPAR- Paris registry of congenital anomalies - contributes to the EUROCAT network
APHP - HUPC - Site Cochin
Equipe EPOPé
FRANCE
ILE-DE-FRANCE
PARIS
EU-CHS:French central hypoventilation syndrome registry - contribute to the European CHS registry
CHU Paris - Hôpital Robert Debré
Equipe "Physiopathologie et neuroprotection des atteintes du cerveau en développement"
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
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 (CPDPN)
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
Hessen
BAD NAUHEIM
BioCTEPH - Biobank of human right ventricular tissue and blood specimens from CTEPH patients (Subproject SFB 1213: Pulmonary Hypertension and Cor Pulmonale )
Kerckhoff-Klinik GmbH
Abteilung für Thoraxchirurgie
GERMANY
Hessen
FRANKFURT AM MAIN
KiRaFe: ChildrenRegister for Congenital Malformations
Universitätsklinikum Frankfurt
KiRaFe Studienleitung - Klinik für Kinderchirurgie und Kinderurologie
GERMANY
Hessen
GIEßEN
German cystic fibrosis registry (contributes to the ECFS patient registry)
Kinderklinik des UKGM am Standort Gießen
Abteilung für Allgemeine Pädiatrie und Neonatologie
GERMANY
Hessen
MARBURG
EARCO Registry (German contact point)
Universitätsklinikum Gießen und Marburg GmbH, Standort Marburg
Alpha-1-Antitrypsin-Labor Marburg
GERMANY
Niedersachsen
HANNOVER
PROGNOSIS : The Prospective German Non-CF-Bronchiectasis Registry - contributes to EMBARC registry
Medizinische Hochschule Hannover
Klinik für Pneumologie
GERMANY
Nordrhein-Westfalen
MÜNSTER
International Prospective Primary Ciliary Dyskinesia (PCD) Registry for Systematic Data Collection on Incidence, Clinical Presentation, Treatment and Course of the Disease -DE
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Allgemeine Pädiatrie
GERMANY
Rheinland-Pfalz
MAINZ
Mainz registry of congenital anomalies - contributes to the EUROCAT network
Universitätsmedizin Mainz
Geburtenregister Mainzer Modell
GERMANY
Saarland
HOMBURG
German alpha-1 antitrypsin deficiency registry - contributes to the Alpha One International Registry (AIR)
Universitätsklinikum des Saarlandes
Klinik für Innere Medizin V - Pneumologie, Allergologie, Beatmungs- und Umweltmedizin
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
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 and ECFS Patient Registry
Department of Dermatology, Venereology and Dermatoncology, Semmelweis University
Department of pediatric pulmonary
IRELAND
County Cork
CORK
South of Ireland registry of congenital anomalies - contributes to the EUROCAT network
St. Finbarr's Hospital
Department of Public Health
IRELAND
County Dublin
DUBLIN
National Alpha-1 Antitrypsin Deficiency Registry - contributes to the Alpha One International Registry (AIR)
Alpha-1 Foundation Ireland
IRELAND
County Dublin
DUBLIN
Dublin registry of congenital anomalies - contributes to the EUROCAT network
Health Services Executive
HSE Registry of Congenital Anomalies (East)
IRELAND
County Dublin
DUBLIN
CFRI: The Cystic Fibrosis Registry of Ireland - contributes to the EUROCARE CF and ECFS registry
University College Dublin
Cystic Fibrosis Registry of Ireland
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. "San Pio" - P.O. "G. Rummo"
U.O.S.D. di Genetica Medica
ITALY
EMILIA ROMAGNA
BOLOGNA
RIPID - Italian registry of diffuse infiltrative pneumopathies
IRCCS Policlinico Sant'Orsola
U.O. Pneumologia e Terapia Intensiva Respiratoria
ITALY
LAZIO
ROMA
Italian cystic fibrosis patient registry
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare
ITALY
LAZIO
ROMA
INMI Biobank
Istituto Nazionale per le Malattie Infettive "Lazzaro Spallanzani"
U.O.C. Microbiologia e Banca Biologica
ITALY
LIGURIA
GENOVA
Galliera Genetic Bank
Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche
ITALY
LOMBARDIA
MILANO
The Italian Registry of Pulmonary Non-tuberculous Mycobacteria - IRENE
Fondazione IRCCS Ca' Granda - Ospedale Maggiore Policlinico
U.O.C. di Pneumologia
ITALY
LOMBARDIA
PAVIA
Italian Alpha-1 antitrypsin Deficiency registry - contributes to the Alpha One International Registry (AIR)
Fondazione IRCCS Policlinico San Matteo
S.C. di Pneumologia
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
NETHERLANDS
Groningen
GRONINGEN
EUROCAT Northern Netherlands - contributes to the international EUROCAT network
UMCG - Universitair Medisch Centrum Groningen
Afdeling Genetica
NETHERLANDS
Utrecht
BAARN
Dutch CF Registry - contributes to the European Cystic Fibrosis Society Patient Registry (ECFSPR)
Nederlandse Cystic Fibrosis Stichting
NETHERLANDS
Zuid-Holland
LEIDEN
Dutch alpha-1 antitrypsin deficiency registry - contributes to the Alpha One International Registry (AIR)
LUMC - Leids Universitair Medisch Centrum
Afdeling Longziekten
POLAND
Poznan
POZNAN
PRCM: Polish registry of congenital malformations - contributes to the EUROCAT network
Uniwersytet Medyczny im. Karola Marcinkowskiego w Poznaniu
Zaklad Genetyki Medycznej
POLAND
Poznan
POZNAN
Polish cystic fibrosis patient registry - contributes to the EUROCARE CF and ECFS registry
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
PORTUGAL
SUL
LISBOA
Portuguese registry for alpha-1 antitrypsin deficiency
Sociedade Portuguesa de Pneumologia
SPAIN
Baleares
PALMA DE MALLORCA
RERIB: Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Consejería de Salud y Consumo
Servicio de Epidemiología
SPAIN
Cataluña
BARCELONA
REHAP: Spanish Registry of Pulmonary Arterial Hypertension
Hospital Clínic de Barcelona
Servicio de Neumología y Alergia Respiratoria
SPAIN
Cataluña
BARCELONA
EARCO Registry (Spanish contact point)
Hospital Universitari Vall d'Hebron
Servicio de Neumología
SPAIN
Madrid
MADRID
SIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Direccion General de Salud Publica
Subdirección General de Vigilancia en Salud Pública
SPAIN
Madrid
MADRID
REHAP: Spanish Registry of Pulmonary Arterial Hypertension
Hospital Universitario 12 de Octubre
Unidad Multidisciplinar de Hipertensión Pulmonar
SPAIN
País Vasco
VITORIA-GASTEIZ
RACAV: Registry of congenital anomalies of the Basque Country (Spain) - contributes to the EUROCAT network
Gobierno Vasco. Departamento de Salud
Registro de anomalías congénitas del País Vasco
SWEDEN
Region Skåne
LUND
AIR: Swedish alpha-1 antitrypsin deficiency registry - contributes to the Alpha One International Registry
Skånes Universitetssjukhus
Skåne University Hospital
SWEDEN
Region Uppsala
UPPSALA
Swedish cystic fibrosis registry
Akademiska barnsjukhuset
Uppsala University Children's Hospital
SWEDEN
Region Uppsala
UPPSALA
SPAHR: Swedish Pulmonary Arterial Hypertension & Chronic thromboembolic pulmonary hypertension registry
Uppsala Universitet
Uppsala Clinical Research Center (UCR)
SWITZERLAND
Suisse Alémanique
BERN
Swiss Primary Ciliary Dyskinesia Registry (CH-PCD)- contributing to the International PCD Registry
Institute of Social and Preventive Medicine (ISPM)
SWITZERLAND
Suisse Alémanique
ZÜRICH
Swiss cystic fibrosis patient registry - contributes to the European Cystic Fibrosis Patient Registry (ECFSPR)
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Pneumologie / Respiratory Medicine
SWITZERLAND
Suisse Alémanique
ZÜRICH
EARCO Registry : European Alpha-1 Research Collaboration (Swiss contact point)
Universitätspital Zürich
Department of Pulmonary Medicine
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
Lothian
EDINBURGH
ChILD-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
Staffordshire
STOKE ON TRENT
EU-CHS: UK Registry for Central Hypoventilation Syndrome (CHS) - part of the European CHS Registry
University Hospital of North Staffordshire - Cheethams Children's Centre
UK Central Hypoventilation Syndrome Registry
UNITED STATES
Texas
HOUSTON
Congenital Diaphragmatic Hernia Study Group (CDHSG) registry - US
University of Texas Health Science Center at Houston
Department of Pediatric Surgery
NETHERLANDS
Utrecht
NIEUWEGEIN
Biobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum
SWEDEN
Region Stockholm
STOCKHOLM
Nationellt register för bronchopulmonell dysplasi
Södersjukhuset AB
Sachsska Children's hospital
SWITZERLAND
Suisse Romande
GENÈVE
Pediatric registry for congenital pulmonary malformations
Hôpital des Enfants - Hôpitaux Universitaires de Genève HUG
Unité de Pneumologie Pédiatrique
SWITZERLAND
Suisse Romande
GENÈVE
Pediatric registry for congenital pulmonary malformations
Hôpital des Enfants - Hôpitaux Universitaires de Genève HUG
Service de Chirurgie de l'Enfant et de l'Adolescent
GERMANY
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
GERMANY
Nordrhein-Westfalen
MÜNSTER
NEOCYST patient registry for childhood cystic kidney disease
KfH Kuratorium für Dialyse und Nierentransplantation e.V.
KfH-Nierenzentrum für Kinder und Jugendliche
GERMANY
Nordrhein-Westfalen
MÜNSTER
Nephronophthisis registry for patients in germany, austria and switzerland
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Allgemeine Pädiatrie
UNITED KINGDOM
Oxfordshire
OXFORD
UK10K RARE CHD - Congenital heart disease variant database
The Wellcome Trust Centre for Human Genetics
Division of Cardiovascular Medicine
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
GHU AP-HP Nord. Université de Paris - 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: Adult European idiopathic pulmonary fibrosis registry - contributes to eurILDreg (European ILD Registry and Biobank)
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
BORSTEL
BMB Nord: BioMaterialBank Nord
Forschungszentrum Borstel Leibniz Lungenzentrum
GERMANY
Schleswig-Holstein
KIEL
POPGEN biobank
Christian-Albrechts-Universität zu Kiel -UKSH
Institut für Epidemiologie
NETHERLANDS
Gelderland
NIJMEGEN
ERN [GENTURIS] - GENTURIS registry: The Genetic Tumour Risk Syndromes Registry
Radboudumc - Radboud universitair medisch centrum
Sectie Klinische Genetica
SPAIN
Galicia
LUGO
REPA: Spanish registry of alveolar proteinosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
Hospital Universitario Lucus Augusti
Servicio de Neumología
SPAIN
Madrid
MADRID
REPA: Spanish registry of alveolar proteinosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
SPAIN
Madrid
MADRID
Spanish registry of lymphangioleiomyomatosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
FRANCE
ILE-DE-FRANCE
PARIS
French cohort of idiopathic pulmonary fibrosis
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Service de pneumologie
FRANCE
ILE-DE-FRANCE
PARIS
French biological collection of idiopathic pulmonary fibrosis
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Service de pneumologie
GERMANY
Hamburg
HAMBURG
Hamburg Glomerulonephritis Registry (subproject SFB 1192: Immune-Mediated Glomerular Diseases - Basic Concepts and Clinical Implications)
UKE - Universitätsklinikum Hamburg-Eppendorf
III. Medizinische Klinik und Poliklinik
IRELAND
County Dublin
DUBLIN
Epidermolysis Bullosa Registry Ireland
Charles Institute of Dermatology
National and International Skin Registry Solutions
IRELAND
County Dublin
DUBLIN
The Irish Rare Kidney Disease Registry and Biobank
St James's Hospital
Trinity Health Kidney Centre - Trinity College Dublin
IRELAND
County Dublin
DUBLIN
The Irish Rare Kidney Disease Registry and Biobank
Tallaght University Hospital
Trinity Health Kidney Centre
SWITZERLAND
Suisse Alémanique
BERN
Swiss Paediatric Renal Registry
Institute of Social and Preventive Medicine (ISPM)
UNITED KINGDOM
Tyne & Wear
WASHINGTON
INPDR : International Niemann-Pick Disease Registry
Niemann-Pick (UK)
INPDR Registry
NETHERLANDS
Noord-Holland
AMSTERDAM
Dutch patient registry for Niemann-Pick Disease Type B
Amsterdam UMC
Afdeling Erfelijke Stofwisselingsziekten
Networks of registries and biobanks
DENMARK
Midtjylland
KARUP
ECFS: European Cystic Fibrosis Society patient registry
European Cystic Fibrosis Society
FRANCE
ILE-DE-FRANCE
PARIS
EU-CHS: European CHS registry
CHU Paris - Hôpital Robert Debré
Equipe "Physiopathologie et neuroprotection des atteintes du cerveau en développement"
GERMANY
Hessen
GIEßEN
eurILDreg: European ILD Registry and Biobank
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen
GERMANY
Hessen
MARBURG
EARCO - European Alpha-1 Research Collaboration
Universitätsklinikum Gießen und Marburg GmbH, Standort Marburg
Alpha-1-Antitrypsin-Labor Marburg
GERMANY
Nordrhein-Westfalen
MÜNSTER
International registry for Primary Ciliary Dyskinesia
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Allgemeine Pädiatrie
ITALY
LOMBARDIA
VARESE
EUROCAT: European surveillance of congenital anomalies
European Commission's Joint Research Centre in Ispra
European Commission's Joint Research Centre
NETHERLANDS
Zuid-Holland
LEIDEN
AIR: Alpha One International Registry
LUMC - Leids Universitair Medisch Centrum
SWITZERLAND
Suisse Alémanique
ZÜRICH
EARCO Registry
Universitätspital Zürich
Department of Pulmonary Medicine
UNITED KINGDOM
Tayside
DUNDEE
EMBARC: The European Bronchiectasis Registry
University of Dundee
Division of Molecular Medicine
FRANCE
ILE-DE-FRANCE
PARIS