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Registri and biobanche

AUSTRIA

WIEN
WIEN

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

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

CIPRO

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

CROAZIA

CROATIA
ZAGREB

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

DANIMARCA

Hovedstaden
COPENHAGEN

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

DANIMARCA

Hovedstaden
COPENHAGEN

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

FRANCIA

ILE-DE-FRANCE
PARIS

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

FRANCIA

ILE-DE-FRANCE
PARIS

French cystic fibrosis patient registry
Vaincre La Mucoviscidose

FRANCIA

OCCITANIE
MONTPELLIER

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

FRANCIA

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

GERMANIA

Hessen
GIEßEN

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

GRECIA

THESSALONIKI
THESSALONIKI

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

IRLANDA

County Dublin
DUBLIN

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

ISRAELE

ISRAEL
KFAR SABA

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

ITALIA

LIGURIA
GENOVA

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

ITALIA

LOMBARDIA
MILANO

LETTONIA

LATVIA
RIGA

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

LITUANIA

SUDOVIA
KAUNAS

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

LUSSEMBURGO

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

NORVEGIA

Østlandet
OSLO

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

POLONIA

Poznan
POZNAN

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

REGNO UNITO; GRAN BRETAGNA

Cambridgeshire
CAMBRIDGE

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

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

REGNO UNITO; GRAN BRETAGNA

Tayside
DUNDEE

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

REPUBBLICA CECA

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

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

SLOVACCHIA

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

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

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

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

SPAGNA

Madrid
MADRID

Finanziato da un ente associato a IRDiRCERN [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

SVEZIA

Region Skåne
LUND

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

SVEZIA

Region Uppsala
UPPSALA

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

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

TURCHIA

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

UNGHERIA

Dél-Dunántúl
PECS

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

UNGHERIA

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

GERMANIA

Baden-Württemberg
HEIDELBERG

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

REGNO UNITO; GRAN BRETAGNA

Oxfordshire
OXFORD

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

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

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

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

PAESI BASSI

Gelderland
NIJMEGEN

Finanziato da un ente associato a IRDiRCERN [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

SPAGNA

Madrid
COSLADA

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

BELGIO

VLAAMS BRABANT
LEUVEN

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

BELGIO

VLAAMS BRABANT
LEUVEN

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

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

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

DANIMARCA

Midtjylland
KARUP

REGNO UNITO; GRAN BRETAGNA

Tayside
DUNDEE

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