The legacy of the Joint Action on Rare Cancers: Ten recommendations for the future policy on rare cancers in Europe
The final meeting of the EU Joint Action for Rare Cancers held at the European Parliament the 10 and 11 September spread key messages for the future: networking, integration of European Reference Networks at the national level, and research methodology for rare patients. As a legacy of three years of multidisciplinary, cross-border work, JARC published their main recommendations for the rare cancer agenda 2030. The agenda and subsequent recommendations arise from needs in two main areas: healthcare networking, and clinical and research methodology. The paper follows a very simple structure, each chapter developing one of the ten recommendations which are:
- Rare cancers are the rare diseases of oncology and need specific approaches by the cancer community and national health systems;
- Rare cancers should be monitored epidemiologically and clinically, properly valuing population-based cancer registry data and real-world clinical data, encouraging all efforts to make all available data interoperable;
- Health systems should exploit networking around multidisciplinary centres of reference and rationalise patient access to available best expertise and minimise health migration;
- Medical education should exploit and serve healthcare networking by proper integration of the university system and all educational players, being instrumental to dedicated career mechanisms and opportunities;
- Research should be fostered by networking and should take into account an expected higher degree of uncertainty, exploiting clinically annotated biobanking, clinical registering, patient referral to ongoing clinical studies, as well as innovative methodologies for clinical research;
- Patient-physician shared clinical decision-making should be especially valued, being crucial to the appropriate approach to the high degree of uncertainty posed by rare cancers;
- Appropriate state-of-the-art instruments should be developed in rare cancers fit to serve clinical decision-making in conditions of uncertainty;
- Regulation on rare cancers should tolerate a higher degree of uncertainty being disease-adapted and providing developers of innovation with certainty of rules across the EU;
- Policy strategies on rare cancers and sustainability of interventions should be based on networking, exploiting national cancer plans, listening to networks and disease-based communities, integrating the EU and the national levels, funding networking;
- Rare patients should be engaged in all crucial areas, such as disease awareness and education, healthcare organization, state-of-the-art instruments, regulatory mechanisms, clinical and translational research.
Overall, the booklet provides an in-depth analysis of the current situation of rare cancers and the issues faced in this area. It also offers insightful solutions, some of which could be transposed and established as models for other rare diseases.
