Rare Cancers Conference: Improving the methodology of clinical research
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.
Rare Cancers Europe
Rare Cancers Europe is a multi-stakeholder initiative addressing specific challenges posed by rare cancers.
It is based on a partnership between the European Society for Medical Oncology (ESMO), the European Organisation for Rare Diseases (Eurordis), the European Cancer Patient Coalition (ECPC), the European Organisation for Research and Treatment of Cancer (EORTC), CONTICANET, EuroBoNeT, the Association of European Cancer Leagues (ECL), the Chronic Myeloid Leukaemia Support Group, the International Brain Tumour Alliance (IBTA), Orphanet, the Chronic Myeloid Leukaemia Advocates Network, GIST Support UK & PAWS-GIST, the Fondazione IRCCS Istituto Nazionale dei Tumori, the European Institute of Oncology (IEO), the European Society for Paediatric Oncology (SIOP Europe), the European School of Oncology (ESO), the European Oncology Nursing Society (EONS), the European Society of Pathology (ESP), Novartis Oncology (initiating sponsor and sustaining industry partner), Pfizer Oncology (sustaining industry partner), and sanofi- aventis (sustaining industry partner).
The initiative is moreover supported by additional corporate supporters.
