We are proud to highlight a major milestone by one of our PREVENTABLE project partners, NOVA University of Lisbon, which has just published the study protocol for our ongoing work under Work Package 4 (WP4) in Open Research Europe.
The protocol outlines the design and methodology of a cross-cultural mixed-methods study involving people with Rare Tumor Risk Syndromes (RTRS), their social networks, and clinical teams. It includes details on the development of two behaviourally informed surveys and focus group guides, which are being implemented across six European countries.

What makes this study particularly impactful is its use of behavioural science, to investigate the barriers and facilitators affecting how care pathways for RTRS are recommended, communicated, and adopted. Two innovative, behaviourally-informed surveys and tailored focus group guides have been developed and implemented to explore these dynamics.

By delving into the psychological, social, and systemic factors that shape cancer prevention decisions, this research supports PREVENTABLE’s broader mission: to advance evidence-based, person-centred strategies for cancer prevention and care—especially for those most vulnerable due to hereditary syndromes.

This research contributes to PREVENTABLE’s mission to advance cancer prevention and care by supporting evidence-based strategies tailored to the needs of individuals and families living with rare genetic syndromes.