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Funded by an IRDiRC member =

Registries and Biobanks

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

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian alpha-1 antitrypsin deficiency registry - contributes to the Alpha One International Registry (AIR)
Centre hospitalier Etterbeek-Ixelles - IRIS Sud
Département de médecine interne

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

ITALY

LOMBARDIA
PAVIA

NETHERLANDS

Zuid-Holland
LEIDEN

PORTUGAL

SUL
LISBOA

Portuguese registry for alpha-1 antitrypsin deficiency
Sociedade Portuguesa de Pneumologia

SPAIN

Cataluña
BARCELONA

Spanish alpha-1 antitrypsin deficiency registry (REDAAT) - contributes to the Alpha One International Registry (AIR)
SEPAR - Sociedad Española de Neumología y Cirugía Torácica
Sociedad Española de Neumología y Cirugía Torácica

SWEDEN

Skane
MALMÖ

Swedish alpha-1 antitrypsin deficiency registry - contributes to the Alpha One International Registry (AIR)
University Hospital MAS - Lund University
Department of respiratory medicine and allergology

SWITZERLAND

Suisse Alémanique
ZÜRICH

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

UNITED KINGDOM

West Midlands
BIRMINGHAM

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

AUSTRIA

TIROL
INNSBRUCK

Austrian registry for inborn errors of metabolism
Medizinische Universität Innsbruck
Pädiatrie I

AUSTRIA

TIROL
INNSBRUCK

Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Zentrum Medizinische Genetik Innsbruck

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Funded by an IRDiRC memberERN [ERN-LUNG] : Rare Respiratory Disease Registry
European Commission
DG Research - Directorate General for Research

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Funded by an IRDiRC memberERN [ERN-LUNG] : LUNG POPULATION REGISTRY
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

DENMARK

Sjælland
COPENHAGEN

Mendelian cytogenetics network online database
The Panum Institute-University of Copenhagen
Department of Cellular and Molecular Medicine

ESTONIA

Tartu
TARTU

Biobank of the Estonian Genome Centre
Institute of Genomics of University of Tartu
The Estonian Genome Centre

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

Baden-Württemberg
HEIDELBERG

Funded by an IRDiRC memberERN [MetabERN] - UIMD: Unified European Registry for Inherited Metabolic DisordersUIMD: Unified European Registry for Inherited Metabolic Disorders
Zentrum für Kinder- und Jugendmedizin - Angelika-Lautenschläger-Klinik
Klinik für Kinderheilkunde I - Sektion für Neuropädiatrie und Stoffwechselmedizin

GERMANY

Baden-Württemberg
REUTLINGEN

RAMEDIS : Rare Metabolic Diseases Database
Klinikum am Steinenberg
Klinik für Kinder- und Jugendmedizin

GERMANY

Baden-Württemberg
REUTLINGEN

RAMEDIS : Rare Metabolic Diseases mutation Database
Klinikum am Steinenberg
Klinik für Kinder- und Jugendmedizin

GERMANY

Hessen
FRANKFURT AM MAIN

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

ITALY

LIGURIA
GENOVA

Cell line and DNA Biobank from patients affected by genetic diseases
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche

ITALY

LIGURIA
GENOVA

Funded by an IRDiRC memberTelethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche

KOREA, REPUBLIC OF

KOREA, REPUBLIC OF
SEOUL

Funded by an IRDiRC memberKorean Mutation Database for Rare Diseases
Seoul National University Hospital
Molecular Diagnostics Laboratory

MOROCCO

Rabat
RABAT

Moroccan National Genetic Database
Institut National d'Hygiène
Département de génétique médicale

NETHERLANDS

Utrecht
UTRECHT

DDRMD - Dutch Diagnosis Registration Metabolic Diseases
UMC Utrecht - Universitair Medisch Centrum Utrecht
Afdeling Metabole Ziekten

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

Cataluña
ESPLUGUES DE LLOBREGAT

Biobank of the Sant Joan de Déu Children's Hospital for Research (BHISJDI)
Fundació Sant Joan de Déu - Institut de Recerca Sant Joan de Déu
Biobanco del Hospital Infantil Sant Joan de Déu para la investigación

SPAIN

Comunidad Valenciana
VALENCIA

SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras

SPAIN

Comunidad Valenciana
VALENCIA

CIBERER Biobank (Biobank of rare diseases)
IIS La Fe - Instituto de Investigación Sanitaria La Fe
Grupo de investigación en biomedicina molecular, celular y genómica

SPAIN

Comunidad Valenciana
VALENCIA

CIBERER Biobank (Biobank of rare diseases)
INCLIVA
Grupo de investigación en Fisiopatología celular y orgánica del estrés oxidativo

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

BioNER: Biobank of the Institute of Rare Diseases Research/Institute of Health Carlos III
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

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

SPAIN

País Vasco
BARAKALDO

Funded by an IRDiRC memberBasque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

Serpin-related disease mutation registry Database
Cambridge Institute for Medical Research, Cambridge University
Structural Medicine

Networks of registries and biobanks

NETHERLANDS

Zuid-Holland
LEIDEN

PAAIR: Patient's Association and Alpha-1 International Registry network (FINALISED)
  • LUMC - Leids Universitair Medisch Centrum
  • Afdeling Longziekten
  • ITALY

    LIGURIA
    GENOVA

    TELETHON NETWORK OF GENETIC BIOBANKS
  • IRCCS Istituto G. Gaslini - Ospedale Pediatrico
  • Centro di diagnostica genetica e biochimica delle malattie metaboliche
  • SPAIN

    Madrid
    MADRID

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