Promoting risk-reduction interventions in Rare Tumour Risk Syndromes – The PREVENTABLE project kicks off

17 March 2023

We are pleased to announce the launch of a new EU-funded project, Cancer prevention vs cancer treatment: the rare tumour risk syndromes battle – PREVENTABLE. The project will merge specialised clinical knowledge on Rare Tumour Risk Syndromes (RTRS) pathways of care, real-life experiences from professionals and patients, and health economic models to estimate the cost-benefit of risk-reduction interventions in RTRS. PREVENTABLE will assess the clinical, social and financial impact of applying multidisciplinary and specialised care to prevent advanced disease in patients suffering from RTRS.

RTRS are rare diseases affecting 5 in 10.000 people or less that genetically predispose individuals to the development of various cancers across their lifetime. It constitutes a fraction of heritable cancers which are rare, neglected, and need specialised care. These cancers differ in type, affected-organ, age of onset, recurrence, and gender-specificity. Provided that RTRS patients survived early onset cancers and reach reproductive age, they have a 50% chance of transmitting the disease to their offspring. From a clinical standpoint, RTRS provide a unique and powerful context for cancer prevention, early diagnosis, and treatment. The genetic diagnosis is made in cancer-free individuals and provides the opportunity to perform intensive surveillance and risk-reduction strategies. The identification of asymptomatic RTRS patients can increase targeted treatments and reduce future hospitalisation, which is the largest fraction of healthcare spending.

The project will provide evidence supporting that healthcare costs decrease when RTRS asymptomatic carriers are actively identified and provided with intensive surveillance and risk-reduction treatments of cancer-prone organs. This will reduce the number of patients developing advanced disease and improve clinical outcomes. Also, the aim is to demonstrate that active prevention in RTRS decreases the need of treating acutely sick patients. PREVENTABLE will reveal a window of opportunity for effective cancer prevention or early disease treatment in RTRS in asymptomatic carriers, and associated savings. Ultimately, the achievement of the project will translate into better care of patients and families affected by RTRS and quality of life improvement.

EHMA is a consortium partner in this project, leading the efforts to make RTRS visible to relevant stakeholders including healthcare professionals, healthcare providers, pharmaceutical industries, insurances, civil societies organisations, policy-makers, and academia. Further, we will conduct a SWOT analysis on the implementation of RTRS care pathways and establish a Stakeholder Group on health financing models. Finally, with the final evidence at hand, we will raise awareness among policy-makers and health insurers about the cost-effectiveness of RTRS prevention vs treatment.

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


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