GENTURIS

Description

General Design

Type

Registry

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

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

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 (RUNMC)

  Netherlands (the)

  https://www.radboudumc.nl

  Data provider, Data access provider

• Aarhus University Hospital

  Denmark

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

  Data provider, Data access provider

• Children's Hospital Agia Sophia

  Greece

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

  Data provider, Data access provider

• Cyprus Institute of Neurology and Genetics (CING)

  Cyprus

  https://www.cing.ac.cy

  Data provider, Data access provider

• Azienda USL di Bologna

  Italy

  http://www.ausl.bologna.it/

  Data provider, Data access provider

• Ospedale di Parma

  Italy

  https://www.ao.pr.it

  Data provider, Data access provider

• Azienda Ospedaliera Universitaria Senese

  Italy

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

  Data provider, Data access provider

• Cambridge University Hospitals NHS Foundation Trust (CUH)

  United Kingdom of Great Britain and Northern Ireland (the)

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

  Data provider, Data access provider

• University Hospital Bonn

  Germany

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

  Data provider, Data access provider

• Centre Hospitalier de Luxembourg (CHL)

  Luxembourg

  https://www.chl.lu/

  Data provider, Data access provider

• Hospital de São João (CHSJ)

  Portugal

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

  Data provider, Data access provider

• Erasmus MC

  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 (INT)

  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

• Agostino Gemelli University Polyclinic

  Italy

  https://www.policlinicogemelli.it/

  Data provider, Data access provider

• Manchester University NHS Foundation Trust (MFT)

  United Kingdom of Great Britain and Northern Ireland (the)

  https://mft.nhs.uk/

  Data provider, Data access provider

• Helsinki University Hospital (HUCH; HUCS; HUS; HYKS)

  Finland

  http://www.hus.fi/en/Pages/default.aspx

  Data provider, Data access provider

• Oulu University Hospital (OUH; OYKS; OYS)

  Finland

  https://www.ppshp.fi/en/Pages/default.aspx

  Data provider, Data access provider

• Ghent University Hospital

  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

• Herzzentrum Dresden Universitaetsklinik (HZDD)

  Germany

  http://www.herzzentrum-dresden.com

  Data provider, Data access provider

• Hospital Universitari Germans Trias i Pujol

  Spain

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

  Data provider, Data access provider

• Hospital Sant Joan de Déu Barcelona

  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 Francisco Gentil (IPO)

  Portugal

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

  Data provider, Data access provider

• Bambino Gesù Children's Hospital (OPBG)

  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 (LUMC)

  Netherlands (the)

  https://www.lumc.nl

  Data provider, Data access provider

• Masaryk Memorial Cancer Institute (MMCI)

  Czechia

  https://www.mou.cz

  Data provider, Data access provider

• Mater Dei Hospital (MDH)

  Malta

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

  Data provider, Data access provider

• Innsbruck Medical University (MUI)

  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

• Medical Genetics Center (MGZ)

  Germany

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

  Data provider, Data access provider

• Medizinische Hochschule Hannover (MHH)

  Germany

  https://www.mhh.de

  Data provider, Data access provider

• University Hospital in Motol

  Czechia

  https://www.fnmotol.cz

  Data provider, Data access provider

• The Netherlands Cancer Institute (NKI; NKI-AVL)

  Netherlands (the)

  https://www.nki.nl

  Data provider, Data access provider

• Odense University Hospital (OUH)

  Denmark

  https://ouh.dk

  Data provider, Data access provider

• Pauls Stradiņš Clinical University Hospital

  Latvia

  https://www.stradini.lv

  Data provider, Data access provider

• Pomeranian Medical University (PMU)

  Poland

  https://www.pum.edu.pl

  Data provider, Data access provider

• IPO Porto

  Portugal

  http://www.ipoporto.pt/en

  Data provider, Data access provider

• Rigshospitalet

  Denmark

  https://www.rigshospitalet.dk/

  Data provider, Data access provider

• Université de Rouen Normandie (URN)

  France

  https://www.univ-rouen.fr

  Data provider, Data access provider

• Tartu University Hospital

  Estonia

  https://www.kliinikum.ee

  Data provider, Data access provider

• Varsinais-Suomen Sairaanhoitopiiri (VSSHP)

  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

• University Medical Center Hamburg-Eppendorf (UKE)

  Germany

  http://www.uke.de/

  Data provider, Data access provider

• Universitair Ziekenhuis Brussel (UZB; UZB VUB)

  Belgium

  https://www.uzbrussel.be

  Data provider, Data access provider

• Hôpitaux Universitaires Henri-Mondor

  France

  http://chu-mondor.aphp.fr/lhopital-henri-mondor/

  Data provider, Data access provider

• Universitair Ziekenhuis Leuven

  Belgium

  https://www.uzleuven.be/en

  Data provider, Data access provider

• University of Liège

  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 Pecs (PTE)

  Hungary

  https://pte.hu

  Data provider, Data access provider

• Vilnius University Hospital Santariskiu Klinikos

  Lithuania

  https://www.santa.lt

  Data provider, Data access provider

• Azienda Ospedale - Università Padova

  Italy

  https://www.aopd.veneto.it

  Data provider, Data access provider

Data dictionaries

Networks

• 

  Rare Disease Network

  A rare disease network is a collaborative framework that brings together healthcare professionals, researchers, patients, and other stakeholders to improve the diagnosis, treatment, and care of individuals with rare diseases. These networks aim to pool knowledge, share best practices, and coordinate efforts across institutions and countries to overcome the challenges posed by the low prevalence and high diversity of rare diseases.

  Network detailsCatalogue

Access conditions

Data access conditions

disease specific research

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Data use conditions

• project specific restriction

  Read more
• institution specific restriction

  Read more

Data access fee

false

Release type

Continuous

Prelinked

true