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Finanziato da un ente associato a IRDiRC =

Registri and biobanche

FRANCIA

ILE-DE-FRANCE
PARIS

Finanziato da un ente associato a IRDiRCRaDiCo-PID: National cohort on Idiopathic Interstitial Pneumonia from infancy to elderly
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service de pneumologie pédiatrique

ITALIA

EMILIA ROMAGNA
BOLOGNA

RIPID - Registro Italiano delle pneumopatie infiltrative diffuse
Policlinico S. Orsola-Malpighi - Area S. Orsola
U.O. Pneumologia e Terapia Intensiva Respiratoria

REGNO UNITO; GRAN BRETAGNA

Lothian
EDINBURGH

Finanziato da un ente associato a IRDiRCChILD-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

Baden-Württemberg
HEIDELBERG

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

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

Finanziato da un ente associato a IRDiRCBiobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum

SVIZZERA

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

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Finanziato da un ente associato a IRDiRCERN [ERN-LUNG] : ERN-LUNG POPULATION REGISTRY
European Commission
DG Research - Directorate General for Research

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Finanziato da un ente associato a IRDiRCERN [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

Finanziato da un ente associato a IRDiRCERN [ERN-LUNG] : ERN-LUNG POPULATION REGISTRY
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Medizinische Klinik 1 - Pneumologie und Allergologie

GERMANIA

Hessen
FRANKFURT AM MAIN

Finanziato da un ente associato a IRDiRCERN [ERN-LUNG] : REGISTRY WAREHOUSE - RD Registry Data Warehouse
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Medizinische Klinik 1 - Pneumologie und Allergologie

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

Population registry of rare diseases of Navarra (Spain)
Instituto de Salud Pública y Laboral de Navarra
Sección de Epidemiología de Enfermedades No Transmisibles

SVIZZERA

Suisse Alémanique
BERN

Swiss Rare Disease Registry
Institute of Social and Preventive Medicine (ISPM)

SVIZZERA

Suisse Alémanique
ZÜRICH

Swiss Rare Disease Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten

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
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service de pneumologie

FRANCIA

ILE-DE-FRANCE
PARIS

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

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

Finanziato da un ente associato a IRDiRCPOPGEN biobank
Christian-Albrechts-Universität zu Kiel -UKSH
Institut für Epidemiologie

REGNO UNITO; GRAN BRETAGNA

Greater London
LONDON

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

REGNO UNITO; GRAN BRETAGNA

Lothian
EDINBURGH

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

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

SPAGNA

Madrid
COSLADA

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

BELGIO

VLAAMS BRABANT
LEUVEN

Pediatric granulomatous arthritis international registry
University Hospitals Leuven - Gasthuisberg
Pediatric Rheumatology

BELGIO

VLAAMS BRABANT
LEUVEN

Biobank of the pediatric granulomatous arthritis international registry
University Hospitals Leuven - Gasthuisberg
Pediatric Rheumatology

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
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service de pneumologie

FRANCIA

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

FRANCIA

ILE-DE-FRANCE
PARIS

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

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

GERMANIA

Hessen
GIEßEN

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

GERMANIA

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

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

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

ITALIA

LAZIO
ROMA

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

ITALIA

LIGURIA
GENOVA

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

PAESI BASSI

Noord-Holland
AMSTERDAM

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

PAESI BASSI

Noord-Holland
NAARDEN

PORTOGALLO

SUL
LISBOA

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

REGNO UNITO; GRAN BRETAGNA

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

REGNO UNITO; GRAN BRETAGNA

West Midlands
BIRMINGHAM

Finanziato da un ente associato a IRDiRCInternational Niemann-Pick Disease Registry
Queen Elizabeth Hospital
Inherited Metabolic Disorders

SPAGNA

Canarias
LAS PALMAS

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

SVEZIA

Region Skåne
LUND

SVEZIA

Region Skåne
LUND

SVEZIA

Region Skåne
LUND

SVEZIA

Region Skåne
LUND

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

Finanziato da un ente associato a IRDiRCRaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
APHP.Sorbonne Université, Hôpital de la Pitié-Salpêtrière
Service de rhumatologie

FRANCIA

ILE-DE-FRANCE
PARIS

Finanziato da un ente associato a IRDiRCRaDiCo-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

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

SPAGNA

Asturias
OVIEDO

Finanziato da un ente associato a IRDiRCRenalTube: Database of patients with primary tubulopathies
Hospital Universitario Central de Asturias
Servicio de Pediatría

Network di registri and biobanche

SPAGNA

Madrid
MADRID

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

    LIGURIA
    GENOVA

    EUROFEVER: PReS network europeo di registri sulle sindromi autoinfiammatorie in età pediatrica
  • IRCCS Istituto G. Gaslini - Ospedale Pediatrico
  • U.O.C. di Pediatria II - I.A.S. Malattie Autoinfiammatorie