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.
- 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.