PREVENTABLE – Cancer prevention vs cancer treatment: the rare tumour risk syndromes battle

Programme: Horizon Europe
Project Status: ONGOING (January 2023 – December 2025)

What aims and scope

The PREVENTABLE project aims to demonstrate the cost-effectiveness of preventive measures in Rare Tumour Risk Syndromes (RTRS) compared to treatment of already developed cancer.

To this end, it will merge specialised clinical knowledge on RTRS pathways of care, real-life clinical data from RTRS patients and experiences from professionals and patients, with health economic models and social sciences approaches to estimate the cost-effectiveness of risk-reduction interventions in RTRS and delineate guidelines for its communication among and within clinical teams and RTRS patients.

How it will become possible 

The diversity of the PREVENTABLE consortium, with a strong clinical component, reflects the multidisciplinary methodology of the project. Nine of the fifteen partners are full members of the European Reference Network (ERN) dedicated to Genetic Tumour Risk Syndromes (GENTURIS). All PREVENTABLE clinical teams are Reference Centres of the ERN GENTURIS, which centralises diagnosis, surveillance, and treatment of RTRS in European countries.

While clinical teams will focus on the clinical assessment of parallel and condition-specific care pathways, non-clinical partners – such as EHMA – will focus on the financial impact of preventive care measures on health systems. Resources and tools for collecting health costs and estimating each care pathway per RTRS will be developed. Partners will model costs and outcomes for RTRS patients and conduct behavioural analysis of the uptake of care pathways for RTRS. Ultimately, the project aims to demonstrate to policy makers the cost-effectiveness of cancer prevention rather than treatment in RTRS patients, thus triggering practical changes in European health systems.

Where EHMA delivers 

Thanks to its long-standing interchanges with policy-makers, EHMA will provide them with PREVENTABLE findings, to ultimately inspire informed decisions about the most cost-effective and beneficial care pathways for RTRS. To achieve this goal, EHMA will carry out an assessment of the barriers and enablers of RTRS care pathways and clinical procedures in different health systems in order to understand administrative, technical, and financial hurdles of risk-prevention interventions. In addition, we will establish and lead a dedicated Stakeholder Group to address health care financing models and use care pathways for RTRS as an example, which will produce scientific publications to be disseminated among researchers, academics and policy-makers.


Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA. Neither the European Union nor HaDEA can be held responsible for them.


RTRS are rare diseases affecting 5 per 10.000 people or less and caused by heritable genetic variants. Although cancer in RTRS can be prevented and survival rates maximised, risk-reduction strategies are not always prioritised, and most healthcare systems keep on opting for the treatment of clinically expressed cancer. Evidence collected in the project will encourage health professionals to take steps towards the implementation of cost-effective, patient-centred RTRS care in Europe, by demonstrating financial benefits from risk-prevention interventions. This could translate into lower expenditures for health systems and better patient health and quality of life outcomes.

RTRS-at-risk individuals, general practitioners, and policy-makers will access project outcomes such as audio-visual materials, webinars, and publications. The PREVENTABLE project will generate evidence that will ultimately support health managers in taking informed decisions to revise care pathways and clinical processes for RTRS and other rare diseases.


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