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Registri and biobanche
FRANCIA
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
GERMANIA
Hessen
GIEßEN
GOLDnet: Registry for Diffuse Parenchymal Lung Disease
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen
ITALIA
EMILIA ROMAGNA
BOLOGNA
RIPID - Registro Italiano delle pneumopatie infiltrative diffuse
IRCCS Policlinico Sant'Orsola
U.O. Pneumologia e Terapia Intensiva Respiratoria
REGNO UNITO; GRAN BRETAGNA
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
GERMANIA
Bayern
MÜNCHEN
Kids Lung Register: International register and biobank for rare lung diseases
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Kinderlungenregister
GERMANIA
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
PAESI BASSI
Utrecht
NIEUWEGEIN
Biobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum
BELGIO
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
ERN [ERN-LUNG] : REGISTRY WAREHOUSE - RD Registry Data Warehouse
European Commission
DG Research - Directorate General for Research
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
Hessen
FRANKFURT AM MAIN
ERN [ERN-LUNG] : REGISTRY WAREHOUSE - RD Registry Data Warehouse
Universitätsklinikum Frankfurt
ERN-LUNG Coordinating Center
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 Extremeño 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
ERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil
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
RERNA: Population-based Rare Disease Registry of Navarre (Spain)
Instituto de Salud Pública y Laboral de Navarra
Observatorio de la Salud Comunitaria
SPAGNA
País Vasco
BARAKALDO
Basque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco
SPAGNA
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
SVIZZERA
Suisse Alémanique
BERN
Swiss Rare Disease Registry (SRSK)
Institute of Social and Preventive Medicine (ISPM)
SVIZZERA
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry (SRSK)
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
BELGIO
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
FRANCIA
AUVERGNE-RHONE-ALPES
BRON
French National Lymphangioleiomyomatosis Registry (RE-LAM-CE)
CHU de Lyon HCL - GH Est-Hôpital Louis Pradel
Service de pneumologie
FRANCIA
ILE-DE-FRANCE
PARIS
Biological collection in sarcoidosis in France
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Service de pneumologie
FRANCIA
ILE-DE-FRANCE
PARIS
French atypical sarcoïdosis clinical forms registry
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Service de pneumologie
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
eurIPFreg: European idiopathic pulmonary fibrosis registry
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen
GERMANIA
Hessen
GIEßEN
eurIPFbank: European idiopathic pulmonary fibrosis biobank
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen
GERMANIA
Hessen
GIEßEN
Giessen PNEUMObank
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen
GERMANIA
Schleswig-Holstein
KIEL
POPGEN biobank
Christian-Albrechts-Universität zu Kiel -UKSH
Institut für Epidemiologie
PAESI BASSI
Gelderland
NIJMEGEN
ERN [GENTURIS] - GENTURIS registry: The ERN Genetic Tumour Risk Syndromes Registry
Radboudumc - Radboud universitair medisch centrum
Sectie Klinische Genetica
REGNO UNITO; GRAN BRETAGNA
Nottinghamshire
NOTTINGHAM
English registry for lymphangioleiomyomatosis
LAM Action Nottingham, Voluntary Action Centre
Division of Respiratory Medicine, Clinical Sciences Building
SPAGNA
Galicia
LUGO
REPA: Spanish registry of alveolar proteinosis
Hospital Universitario Lucus Augusti
Servicio de Neumología
FINLANDIA
Finland
HELSINKI
Finnish IPF registry
University of Helsinki
Institute of Clinical Medicine
FRANCIA
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
FRANCIA
ILE-DE-FRANCE
PARIS
French cohort of idiopathic pulmonary fibrosis
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Service de pneumologie
FRANCIA
ILE-DE-FRANCE
PARIS
French biological collection of idiopathic pulmonary fibrosis
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Service de pneumologie
FRANCIA
ILE-DE-FRANCE
PARIS
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
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
GERMANIA
Bayern
GAUTING
INSIGHTS-IPF Investigating Significant Health Trends in Idiopathic Pulmonary Fibrosis
Asklepios-Fachkliniken München-Gauting
Klinik für Pneumologie
GERMANIA
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
GERMANIA
Mecklenburg-Vorpommern
ROSTOCK
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
Epidermolysis Bullosa Registry Ireland
Charles Institute of Dermatology
National and International Skin Registry Solutions
IRLANDA
County Dublin
DUBLIN
The Irish Rare Kidney Disease Registry and Biobank
St James's Hospital
Trinity Health Kidney Centre - Trinity College Dublin
IRLANDA
County Dublin
DUBLIN
The Irish Rare Kidney Disease Registry and Biobank
Tallaght University Hospital
Trinity Health Kidney Centre
PAESI BASSI
Utrecht
UTRECHT
PHARMACHILD patient registry: Long-term pharmacovigilance for adverse effects in childhood arthritis, focusing on immune modulatory drugs (part of PRINTO network)
UMC Utrecht - Universitair Medisch Centrum Utrecht
Polikliniek Immunologie
SPAGNA
Canarias
LAS PALMAS DE GRAN CANARIA
Spanish Rheumatology Society Lupus Registry
Hospital Universitario de Gran Canaria Dr. Negrín
Servicio de Reumatología
SVEZIA
Region Skåne
LUND
CYBAbase: Mutation registry for autosomal recessive chronic granulomatous disease (CGD), deficiency of p22phox
Lunds Universitet
Department of Experimental Medical Science
SVEZIA
Region Skåne
LUND
CYBBbase: Mutation registry for X-linked chronic granulomatous disease (previously known as X-CDGbase)
Lunds Universitet
Department of Experimental Medical Science
SVEZIA
Region Skåne
LUND
NCF1base: Mutation registry for autosomal recessive chronic granulomatous disease (CGD), deficiency of p47phox
Lunds Universitet
Department of Experimental Medical Science
SVEZIA
Region Skåne
LUND
NCF2base: Mutation registry for autosomal recessive chronic granulomatous disease (CGD), deficiency of p67phox
Lunds Universitet
Department of Experimental Medical Science
SVEZIA
Region Stockholm
SOLNA
IRBIS: International registry for biologics in systemic lupus erythematosus
Karolinska Institutet
Department of Medicine, Solna (MedS)
SVIZZERA
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
FRANCIA
ILE-DE-FRANCE
PARIS
RaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
AP-HP.Sorbonne Université - Hôpital de la Pitié-Salpêtrière
Service de rhumatologie
FRANCIA
ILE-DE-FRANCE
PARIS
RaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
Groupe hospitalier AP-HP.6 - Hôpital Tenon
Service de médecine interne
GERMANIA
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
PAESI BASSI
Noord-Holland
AMSTERDAM
Dutch patient registry for Niemann-Pick Disease Type C
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten
PAESI BASSI
Noord-Holland
AMSTERDAM
Dutch patient registry for Niemann-Pick Disease Type B
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten
REGNO UNITO; GRAN BRETAGNA
Greater Manchester
MANCHESTER
Registry for Patients with Niemann-Pick Type C Disease
St Mary's Hospital
Manchester Cente for Genomic Medicine
REGNO UNITO; GRAN BRETAGNA
West Midlands
BIRMINGHAM
International Niemann-Pick Disease Registry
Queen Elizabeth Hospital
Inherited Metabolic Disorders
SPAGNA
Asturias
OVIEDO
RenalTube: Database of patients with primary tubulopathies
Hospital Universitario Central de Asturias
Servicio de Pediatría
PAESI BASSI
Utrecht
UTRECHT
STRIVE: A Long-term, Multi-center, Longitudinal Post-marketing, Observational Registry to Assess Long Term Safety and Effectiveness of HUMIRA® (Adalimumab) in Children With Moderately to Severely Active Polyarticular or Polyarticular-course Juvenile Idiopathic Arthritis (JIA) - NL
UMC Utrecht - Universitair Medisch Centrum Utrecht
Polikliniek Immunologie
Network di registri and biobanche
ITALIA
LIGURIA
GENOVA