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This proposal focus on this transfer of best practice acknowledging the need for collaboration between
countries and added value of interdisciplinary and policy-practice-research collaboration. The prescription
of physical activity is a method that can reach and enable different population groups enhancing their
physical activity for prevention and treatment of non-communicable diseases. Moreover, given access to
health services this includes also socially disadvantaged groups leading to reduction in health inequalities.
This means that the present proposal has the potential to contribute to meeting the objects and priorities
in the work programme.

Target groups are organisations, stakeholders and end-users included in the local implementations. Target
groups for dissemination will be health care educators and practitioners, physical activity suppliers, as well
as patients and the general public. Special emphasis will be placed on involving policy and decision makers
from authorities at national, regional and local level.

STarting an Adult Rare Tumor European Registry [STARTER] - This project aims to set-up a clinical registry
1
for the European Reference Network (ERN) on Rare Adult Cancers (EURACAN) which is focusing on 10 out
of the 12 families of rare cancers, each corresponding to a EURACAN “domain”.

This project will:

• Develop the IT infrastructure of the Registry exploiting tools defined by the European Rare Disease
Registry Infrastructure. The IT will be interoperable with other rare disease registries and compliant with
the FAIR (findable, accessible, interoperable and reusable) principles.

• Identify the core data set for each of the EURACAN domain. The core data set will include data on patient
characteristics, exposure (disease, devices, procedures, treatments etc.) and outcomes. Standard
terminology will be used to ensure the “semantic” interoperability.

• Address ethical, legal and privacy issue to ensure the data collection establishing a legal structure to
ensure legal agreements between all partners involved (related to use of data, IP, confidentiality, etc.).

• Define the Registry governance to clarify the rules and procedures to access and manage the Registry.

• Develop the sustainability strategy to secure future funding for data acquisition and management at the
end of this project

Different stakeholders including EURACAN members; rare cancer patients; researchers (including all
disease-based collaborative groups for clinical and translational research on rare adult solid cancers);
scientific societies will be informed and engaged in setting up and, more important, fully use the Registry
also after the end of this project.

1 https://webgate.ec.europa.eu/chafea_pdb/health/projects/947604/summary