The European Society for Medical Oncology and Rare Cancers Europe have joined forces to present the first Conference addressing the scientific and educational needs of relevant stakeholder groups concerning challenges and potential solutions in the field of clinical research on rare cancers.
According to surveillance data from RARECARE, www.rarecare.eu, around 4 million people in the European Union are affected by rare cancers. Despite the rarity of each individual cancer type, rare cancers represent in total about 20% of all cancer cases, including all cancers in children. Rare cancers are classified in the group of rare diseases which is defined in the European Union as diseases with a prevalence of fewer than 5 cases out of a population of 10,000. As such, patients with rare cancers are faced with particular challenges, including late or incorrect diagnosis and difficulties finding clinical expertise and accessing appropriate treatments. In addition, it is difficult carrying out clinical studies due to the small number of patients, there is a possible lack of interest in developing new therapies, a high level of uncertainty in clinical decision-making, and the scarcity of available registries and tissue banks.
Bringing together high-level speakers and participants from all over Europe, the Conference offers an opportunity for a wide variety of stakeholders to identify barriers to implementing effective and efficient methodology in clinical research on rare cancers, and to debate scenarios for solutions.