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Registries and Biobanks

DENMARK

Hovedstaden
COPENHAGEN

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

FRANCE

CENTRE-VAL DE LOIRE
TOURS

NF-France: genotype/phenotype database on neurofibromatosis 1
CHRU de Tours - Hôpital Clocheville
Pôle Enfants - Neuropédiatrie et handicaps

HUNGARY

Dél-Dunántúl
PECS

Neurofibromatosis type 1 biobank
Clinical Center - University of Pécs
Department of Medical Genetics

HUNGARY

Közép-Magyarország
BUDAPEST

Nemzeti NF Regiszter
Nemzeti NF Regiszter
NF Magyarorszag

ITALY

PUGLIA
SAN GIOVANNI ROTONDO

Genetic Biobank from patients with Williams-Beuren syndrome and other genomic disorders
IRCCS Ospedale Casa Sollievo della Sofferenza -Poliamb. Giovanni Paolo II
U.O.C. Genetica Medica

ITALY

VENETO
PADOVA

North-east Italy registry of neurofibromatosis
Azienda Ospedaliera di Padova
U.O.C. Genetica Clinica ed Epidemiologica

NETHERLANDS

Zuid-Holland
ROTTERDAM

ENCORE Biobank for Neurodevelopmental Disorders (blood/saliva/skin biopsies)
Erasmus MC - Erasmus Medisch Centrum
Afdeling Neurowetenschappen

SPAIN

Asturias
OVIEDO

Registro MEN: Spanish registry of multiple endocrine neoplasia, pheochromocitomas and paragangliomas
Hospital Universitario Central de Asturias
Servicio de Endocrinología y Nutrición

SPAIN

Castilla - León
SALAMANCA

National DNA Bank: Rare diseases sample collection
Centro de Investigación del Cáncer (USAL-CSIC)
Banco Nacional de ADN

GERMANY

Baden-Württemberg
HEIDELBERG

Funded by an IRDiRC memberNational Cancer-predisposing syndrome registry
Deutsches Krebsforschungszentrum
KITZ - Hopp-Kindertumorzentrum Heidelberg

GERMANY

Baden-Württemberg
TÜBINGEN

STEP Registry: Registry for rare tumors in children and adolescents
Universitätsklinik für Kinder- und Jugendmedizin Tübingen
Abteilung für allgemeine Pädiatrie, Hämatologie/Onkologie

NETHERLANDS

Zuid-Holland
LEIDEN

Biobank Bone Remodeling and Mineralisation Disorders (whole blood/plasma/serum/urine/DNA/bone)
LUMC - Leids Universitair Medisch Centrum
Afdeling Endocrinologie

PORTUGAL

CENTRO
COIMBRA

Central regional cancer patient registry
Instituto Portuguęs de Oncologia de Coimbra de Francisco Gentil, EPE
Registo Oncológico Regional - Zona Centro

PORTUGAL

ILHAS
AÇORES

Açores regional cancer patient registry (RORA)
Centro de Oncologia dos Açores Prof Doutor José Conde
Registo Oncológico Regional dos Açores

PORTUGAL

NORTE
PORTO

North regional cancer registry (RORENO)
Instituto Portuguęs de Oncologia do Porto, EPE / IPOFG - CRO Porto
Registo Oncológico Regional do Norte

PORTUGAL

NORTE
VILA NOVA DE GAIA

Vila Nova de Gaia regional cancer registry (ROG)
Centro Hospitalar de Vila Nova de Gaia
Registo de Cancro (ROG)

AUSTRIA

TIROL
INNSBRUCK

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

AUSTRIA

WIEN
WIEN

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
Sciensano
Health Services Research - Rare Diseases

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

ENRAH: European alternating hemiplegia and rare epilepsies registry in childhood
Secretariat Brussels, Postbus 10009
European Network for Research on Alternating Hemiplegia

DENMARK

Sjćlland
COPENHAGEN

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

ESTONIA

Tallinn
TALLINN

Estonian cancer registry - contributes to the RARECARENet project
National Institute for Health Development
Estonian Cancer Registry

ESTONIA

Tartu
TARTU

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

FINLAND

Finland
HELSINKI

Finnish cancer registry - contributes to the RARECARE project
Syöpätautien tilastollinen ja epidemiologinen tutkimuslaitos
Finnish Cancer Registry

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)

FRANCE

ILE-DE-FRANCE
PARIS

FRANCE

ILE-DE-FRANCE
PARIS

Funded by an IRDiRC memberRaDiCo-FARD: National cohort for the evaluation of individual burden in the course of rare skin diseases
Hôpital Necker-Enfants Malades
Centre MAGEC (MAladies rares Génétiques ŕ Expression Cutanée)

GERMANY

Baden-Württemberg
HEIDELBERG

Epidemiological cancer registry Baden-Württemberg
Epidemiologisches Krebsregister am DKFZ Heidelberg
Epidemiologisches Krebsregister Baden-Württemberg

GERMANY

Baden-Württemberg
HEIDELBERG

Funded by an IRDiRC memberERN [ERKNet] - ERKReg: The European Rare Kidney Disease Registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg

GERMANY

Baden-Württemberg
TÜBINGEN

RetDis Database: blood or DNA samples of patients and families with inherited eye diseases
Department für Augenheilkunde Tübingen
Molekulargenetisches Labor

GERMANY

Baden-Württemberg
TÜBINGEN

RetDis Database: clinical descriptions of patients and families with inherited eye diseases
Department für Augenheilkunde Tübingen
Molekulargenetisches Labor

GERMANY

Bayern
ERLANGEN

EEBB: European Epilepsy Brain Bank
Universitätsklinikum Erlangen - Kopfkliniken
Neuropathologisches Institut

GERMANY

Bayern
ERLANGEN

German epilepsy registry
Universitätsklinikum Erlangen - Kopfkliniken
Neuropathologisches Institut

GERMANY

Bayern
MÜNCHEN

MCR - Munich Cancer Registry
LMU Klinikum der Universität München - Campus Großhadern
Tumorregister München

GERMANY

Bayern
NÜRNBERG

Bayern population based cancer registry
Registerstelle des Krebsregisters Bayern

GERMANY

Berlin
BERLIN

GERMANY

Bremen
BREMEN

Bremen cancer registry
Bremer Institut für Präventionsforschung und Sozialmedizin (BIPS)
Registerstelle des Bremer Krebsregisters

GERMANY

Hamburg
HAMBURG

Hamburg cancer registry
Behörde für Wissenschaft, Forschung, Gleichstellung und Bezirke
Hamburgisches Krebsregister

GERMANY

Nordrhein-Westfalen
BONN

Brain-Net - brain tissue bank Bonn (epilepsy, brain tumor)
Universitätsklinikum Bonn (AöR)
Hirntumor-Referenzzentrum der DGNN

GERMANY

Rheinland-Pfalz
MAINZ

German childhood cancer registry (Partner of ACCIS: Automated Childhood Cancer Information System, Member of IACR and ENCR)
Institut für Medizinische Biometrie, Epidemiologie und Informatik (IMBEI)
Deutsches Kinderkrebsregister am IMBEI

GERMANY

Saarland
SAARBRÜCKEN

GERMANY

Schleswig-Holstein
KIEL

German central children tumor registry
Universitätsklinikum Schleswig-Holstein - Campus Kiel
Institut für Pathologie des UKSH und der CAU zu Kiel

GERMANY

Schleswig-Holstein
LÜBECK

Schleswig-Holstein cancer registry
Institut für Krebsepidemiologie e.V.
Registerstelle Krebsregister Schleswig-Holstein

ICELAND

ICELAND
REYKJAVIK

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

ITALY

LOMBARDIA
MILANO

Funded by an IRDiRC memberERN [EURACAN] - STARTER: STarting an Adult Rare Tumor European Registry
Fondazione IRCCS Istituto Nazionale dei Tumori
Fondazione IRCCS - Istituto Nazionale dei Tumori

KOREA, REPUBLIC OF

KOREA, REPUBLIC OF
SEOUL

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

MALTA

MALTA
GUARDAMANGIA

Maltese cancer registry - contributes to the RARECARE project
Departement of Health Information
Malta National Cancer Registry

MOROCCO

Rabat
RABAT

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

NORWAY

Řstlandet
OSLO

Norwegian cancer registry - contributes to the RARECARE project
Institute of Population-Based Cancer Research
Cancer Registry of Norway

NORWAY

Řstlandet
OSLO

Norwegian registry on rare disorders
Oslo University Hospital, Ullevaal
Norsk register for sjeldne diagnoser

POLAND

Kielce
KIELCE

Kielce cancer registry - contributes to the RARECARE project
Holycross Cancer Centre
Department of Cancer Control & Epidemiology

POLAND

Kraków
KRAKOW

Cracow cancer registry - contributes to the RARECARE project
Centrum Onkologii - Instytut im. Marii Sklodowskiej-Curie, Oddzial w Krakowie
Department of Epidemiology

POLAND

Warszawa
WARSZAWA

Mazovian Cancer Registry - contributes to the RARECARE project
Centrum Onkologii - Instytut im. Marii Sklodowskiej-Curie
Cancer Center and Institute of Oncology

PORTUGAL

NORTE
PORTO

Tumour bank
Centro Hospitalar de S. Joăo, EPE
Serviço de Anatomia Patológica

PORTUGAL

SUL
LISBOA

Registo Oncológico Regional Sul - contribui para o projeto RARECARE
Instituto Portuguęs de Oncologia - Centro de Lisboa
Registo Oncológico Regional Sul

SLOVAKIA

Bratislavsky kraj
BRATISLAVA

National cancer registry (contributes to the RARECARE project)
National Health Information Center
National Cancer Registry

SLOVENIA

SLOVENIA
LJUBLJANA

Slovenian cancer registry - contributes to the RARECARE project
Institute of Oncology Ljubljana
Cancer Registry of Slovenia

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

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

Cataluńa
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

Extremadura
MÉRIDA

Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeńo 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

SWEDEN

Region Stockholm
STOCKHOLM

Swedish Childhood Cancer Registry
Astrid Lindgren Children's Hospital - Karolinska
Paediatric Oncology

SWITZERLAND

Suisse Alémanique
BERN

Swiss Childhood Cancer Registry
Institute of Social and Preventive Medicine (ISPM)

SWITZERLAND

Suisse Alémanique
BERN

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

GERMANY

Baden-Württemberg
HEIDELBERG

CERTAIN: Cooperative European Paediatric Renal Transplant Initiative registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg

GERMANY

Niedersachsen
GÖTTINGEN

ESNEK - Rare paediatric neurological disease registry Germany
Universitätsmedizin Göttingen
Geschäftsstelle der ESNEK

GERMANY

Nordrhein-Westfalen
MÜNSTER

Brain-Net - brain tissue bank Munster (pediatric neuropathology)
Institut für Neuropathologie der Medizinischen Fakultät Münster
Institut für Neuropathologie

ITALY

EMILIA ROMAGNA
BOLOGNA

Italian registry of skeletal dysplasia
Istituto Ortopedico Rizzoli - Centro di Ricerca e Poliambulatorio
Laboratorio di Genetica Molecolare - S.S.D. di Genetica Medica e Malattie Rare Ortopediche

NETHERLANDS

Noord-Holland
AMSTERDAM

ESPN/ERA-EDTA Registry: European Registry for Children on Renal Replacement Therapy
Amsterdam UMC, locatie AMC
Afdeling Klinische Informatiekunde

NETHERLANDS

Zuid-Holland
LEIDEN

Funded by an IRDiRC memberERN [BOND] - EuRR-Bone: European Registry for Rare Bone and Mineral Conditions
LUMC - Leids Universitair Medisch Centrum
Afdeling Endocrinologie

SPAIN

Madrid
MADRID

Funded by an IRDiRC memberERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil

UNITED KINGDOM

Avon
BRISTOL

UK renal rare disease biobank
Southmead Hospital
Academic Renal Unit

UNITED KINGDOM

West Midlands
BIRMINGHAM

UK Renal Rare Disease Registry (RaDaR) - Part of OXAL Europe
Birmingham Children's Hospital NHS Foundation Trust
Birmingham Children's Hospital

ITALY

CALABRIA
CATANZARO

SPAIN

Madrid
MADRID

ECEMC: Registry of the Spanish Collaborative Study of Congenital Malformations
ISCIII - Instituto de Salud Carlos III
Unidad de Investigación sobre Anomalías Congénitas

Networks of registries and biobanks

GERMANY

Schleswig-Holstein
LÜBECK

GEKID: Association of the epidemiologic cancer registries
  • Institut für Krebsepidemiologie e.V.
  • Registerstelle Krebsregister Schleswig-Holstein
  • 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
  • GERMANY

    Bayern
    MÜNCHEN

    BNE: BrainNet Europe II: European brain tissue bank
  • Zentrum für Neuropathologie und Prionforschung (ZNP)
  • Zentrum für Neuropathologie und Prionforschung der LMU München