Starting an Adult Rare Tumour European Registry

STARTER

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

The EURACAN registry will cover all the 10 families of rare adult solid cancers included in EURACAN: sarcomas; rare neoplasms of the female genital organs and placenta; rare genitourinary cancers; rare neuroendocrine tumours; rare digestive cancers; rare endocrine cancers; rare head and neck cancers; rare thoracic cancers; rare skin/eye melanoma and rare brain tumours.

The EURACAN registry will exploit at European level, data coming from individual expert health care providers (HCP), from national and European registries.
It will be interoperable with other  rare disease registries and compliant with the FAIR (findable, accessible, interoperable and reusable) principles.

Content Coming Soon:

  • Registry Mission
  • Registry Concept
  • Enrolment by disease
  • Enrolment by centre
  • Registry Reports
  • Data Management
  • Registry governance
  • Data access requests
  • FAQs

Contacts:

Annalisa Trama
Lucia Buratti

STARTER will optimize 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 data-set and the registry semantic interoperability
  • addressing ethical and legal issues for data sharing
  • outlining EURACAN Registry governance and sustainability strategy.

 

STARTER is 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.

Circle
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.
Co funded by the European Union
European Reference Network
Fondazione IRCCS Istituto Nazionale dei Tumori
Sistema Socio Sanitario Lombardia
Leon Berard - Centre de lutte contre le cancer
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