GENTURIS

Description

General Design

Type

Registry

Cohort type

Clinical cohort

Data collection type

Retrospective, Prospective

Design

Longitudinal

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Design description

Patients with rare genetic tumour risk syndromes

Start/End data collection

2023 (ongoing)

Population

Countries

Austria, Estonia, France, Germany, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands (the), Norway, Czechia, Poland, Portugal, Cyprus, Denmark, Belgium, Finland, Slovenia, Sweden, Spain, United Kingdom of Great Britain and Northern Ireland (the)

Population age groups

All ages

Inclusion criteria

Hospital patient inclusion criterion

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Other inclusion criteria

Patients with a proven genetic predisposition (i.e. patients with a pathogenic germline variant) associated with a thematic disease group covered by ERN GENTURIS, OR patients who are highly suspected of having a genetic predisposition associated with a thematic disease groups; and patients known at HCPs that are Full Member, Affiliated Partner or Supporting Partner of ERN GENTURIS

Organisations

• Radboud university medical center (Radboudumc)

  Netherlands (the)

  https://www.radboudumc.nl

  Data provider, Data access provider

• Aarhus Universitetshospital 

  Denmark

  http://www.en.auh.dk/

  Data provider, Data access provider

• Aghia Sophia Children's Hospital 

  Greece

  http://www.paidon-agiasofia.gr/

  Data provider, Data access provider

• Archbishop Makarios III Hospital; Karaiskakio Foundation; Cyprus Institute of Neurology and Genetics 

  Cyprus

  https://www.cing.ac.cy

  Data provider, Data access provider

• Azienda Ospedaliera di Padova 

  Italy

  http://www.sanita.padova.it/

  Data provider, Data access provider

• Azienda Ospedaliero-Universitaria di Bologna 

  Italy

  Data provider, Data access provider

• Azienda Ospedaliero-Universitaria di Parma 

  Italy

  Data provider, Data access provider

• Azienda Ospedaliero-Universitaria Senese 

  Italy

  http://www.ao-siena.toscana.it/

  Data provider, Data access provider

• Cambridge University Hospitals NHS Foundation Trust 

  United Kingdom of Great Britain and Northern Ireland (the)

  http://www.cuh.org.uk/

  Data provider, Data access provider

• Center for Hereditary Tumor Syndromes (CHT), University Hospital Bonn (CHT)

  Germany

  https://www.ukb.uni-bonn.de/

  Data provider, Data access provider

• Centre Hospitalier du Luxembourg 

  Luxembourg

  https://www.chl.lu/

  Data provider, Data access provider

• Centro Hospitalar Universitário de São João - CHUSJ 

  Portugal

  http://portal-chsj.min-saude.pt/pages/2

  Data provider, Data access provider

• Erasmus Medical Center 

  Netherlands (the)

  https://www.erasmusmc.nl

  Data provider, Data access provider

• Fondazione IRCCS CA'Granda Ospedale Maggiore Policlinico 

  Italy

  http://www.policlinico.mi.it/

  Data provider, Data access provider

• Fondazione IRCCS Istituto Nazionale dei Tumori 

  Italy

  http://www.istitutotumori.mi.it/

  Data provider, Data access provider

• Fondazione IRCCS Istituto Neurologico Carlo Besta 

  Italy

  https://www.istituto-besta.it

  Data provider, Data access provider

• Fondazione Policlinico Universitario A. Gemelli 

  Italy

  https://www.policlinicogemelli.it/

  Data provider, Data access provider

• Genomic Medicine, Central Manchester Foundation Trust 

  United Kingdom of Great Britain and Northern Ireland (the)

  Data provider, Data access provider

• Ghent University Hospital (CMGG)

  Belgium

  http://www.uzgent.be/

  Data provider, Data access provider

• Guy's and St. Thomas' NHS Foundation Trust 

  United Kingdom of Great Britain and Northern Ireland (the)

  http://www.guysandstthomas.nhs.uk/Home.aspx

  Data provider, Data access provider

• Haukeland University Hospital 

  Norway

  http://www.helse-bergen.no/no/Sider/default.aspx

  Data provider, Data access provider

• Helsinki University Hospital 

  Finland

  Data provider, Data access provider

• Hereditary Cancer Syndrome Center Dresden 

  Germany

  http://www.herzzentrum-dresden.com

  Data provider, Data access provider

• Hospital Germans Trias I Pujol - lnstitut Catala d'Oncologia 

  Spain

  http://www.gencat.cat/ics/germanstrias/

  Data provider, Data access provider

• Hospital Sant Joan de Déu 

  Spain

  http://www.hsjdbcn.org/portal/en/institut-pediatric/inicio

  Data provider, Data access provider

• Institut Curie 

  France

  http://www.institut-curie.org/

  Data provider, Data access provider

• Institute of Oncology Ljubljana 

  Slovenia

  https://www.onko-i.si

  Data provider, Data access provider

• Instituto Português de Oncologia de Lisboa Francisco Gentil, EPE 

  Portugal

  http://www.ipolisboa.min-saude.pt/

  Data provider, Data access provider

• IRCCS Ospedale Pediatrico Bambino Gesù 

  Italy

  https://www.ospedalebambinogesu.it

  Data provider, Data access provider

• Karolinska University Hospital 

  Sweden

  http://www.karolinska.se/en

  Data provider, Data access provider

• Leiden University Medical Center 

  Netherlands (the)

  https://www.lumc.nl

  Data provider, Data access provider

• Masaryk Memorial Cancer Institute 

  Czechia

  https://www.mou.cz

  Data provider, Data access provider

• Mater Dei Hospital 

  Malta

  http://health.gov.mt/en/MDH/Pages/Home.aspx

  Data provider, Data access provider

• Medical University of Innsbruck 

  Austria

  https://www.i-med.ac.at/mypoint/

  Data provider, Data access provider

• Medical University of Vienna 

  Austria

  https://www.meduniwien.ac.at

  Data provider, Data access provider

• Medizinisch Genetisches Zentrum 

  Germany

  https://www.mgz-muenchen.com/

  Data provider, Data access provider

• Medizinische Hochschule Hannover 

  Germany

  https://www.mhh.de

  Data provider, Data access provider

• Motol University Hospital 

  Czechia

  https://www.fnmotol.cz

  Data provider, Data access provider

• Netherlands Cancer Institute - Antoni van Leeuwenhoek 

  Netherlands (the)

  https://www.nki.nl

  Data provider, Data access provider

• Odense Universitetshospital 

  Denmark

  https://ouh.dk

  Data provider, Data access provider

• Oulu University Hospital 

  Finland

  Data provider, Data access provider

• Pauls Stradins Clinical University Hospital 

  Latvia

  https://www.stradini.lv

  Data provider, Data access provider

• Pomeranian Medical University - University Clinical Hospital no 1 

  Poland

  https://www.pum.edu.pl

  Data provider, Data access provider

• Porto Comprehensive Cancer Center 

  Portugal

  Data provider, Data access provider

• Rigshospitalet 

  Denmark

  https://www.rigshospitalet.dk/

  Data provider, Data access provider

• Rouen University Hospital 

  France

  https://www.univ-rouen.fr

  Data provider, Data access provider

• Tartu University Hospital 

  Estonia

  https://www.kliinikum.ee

  Data provider, Data access provider

• The Hospital District of Southwest Finland, Turku University Hospital (TYKS)

  Finland

  http://www.vsshp.fi/fi/Sivut/default.aspx

  Data provider, Data access provider

• Universitätsklinikum Erlangen 

  Germany

  http://www.uk-erlangen.de/en/

  Data provider, Data access provider

• Universitätsklinikum Hamburg-Eppendorf 

  Germany

  http://www.uke.de/

  Data provider, Data access provider

• University Hospital Brussels 

  Belgium

  Data provider, Data access provider

• University Hospital Henri Mondor-National Referral Center 

  France

  Data provider, Data access provider

• University Hospital Leuven 

  Belgium

  http://www.kuleuven.be/english

  Data provider, Data access provider

• University Hospital Liege 

  Belgium

  https://www.uliege.be

  Data provider, Data access provider

• University Medical Center Groningen (UMCG)

  Netherlands (the)

  https://www.umcg.nl

  Data provider, Data access provider

• University of Pécs 

  Hungary

  https://pte.hu

  Data provider, Data access provider

• Vilniaus universiteto ligoninės Santaros klinikos 

  Lithuania

  https://www.santa.lt

  Data provider, Data access provider

Dataset variables

Networks

• 

  Rare Disease Network

  Network detailsCatalogue

Access conditions

Data access conditions

disease specific research

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Data use conditions

• project specific restriction

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• institution specific restriction

  Read more

Data access fee

false

Release type

Continuous

Prelinked

true