STARTER

Starting an Adult Rare Tumour Registry was a Health Programme funded project aimed to set-up a clinical registry for EURACAN. The project was launched in April 2020 and ran for 36 months.

Aims

STARTER aimed to optimise the development of the EURACAN registry by:

  • providing operational solutions on the registry design

  • creating the IT infrastructure of the EURACAN registry

  • defining the core dataset and the registry semantic interoperability

  • addressing ethical and legal issues for data sharing

  • outlining EURACAN Registry governance and sustainability strategy

  • outlining EURACAN Registry governance and sustainability strategy

STARTER was a collaboration between 2 associated partners:

• Fondazione IRCCS Istituto Nazionale dei Tumori, Italy
• Comprehensive cancer centre Léon Bérard, France

The collaborating stakeholders include EURACAN members, rare cancer patients (EURORDIS and European Cancer Patients Coalition-ECPC), population-based cancer registries and researchers.

‍The STARTER Project webpage is part of the project ‘944607/STARTER’, which has received funding from the European Union’s Health Programme (2014-2020). The content of this Website section represents the views of the author and his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.