Rare Cancer Research Center

Rare tumors are defined as those with an incidence of < 6/100,000 inhabitants. All together, rare tumors make up 20%–25% of all cancers (one diagnosis out of every four or five is a rare tumor). For the group of sarcomas alone, there are more than 50 different histotypes. The diagnosis of a rare tumor has a devastating impact on a person’s life not only because he or she suffers from cancer—its rarity also has negative repercussions on the family and society.

The clinical management of rare tumors is very complex due to their rarity and very high terogenity and involves many intra- and inter-disciplinary professionals. If this involvement is missing, patients with rare tumors are at risk of receiving suboptimal management for various reasons:

• Diagnosis of rare cancers is often delayed because it almost always requires consultations with specialists, which usually occurs only after unnecessary and costly diagnostic tests have been performed;

• The surgical and medical therapy of rare tumors is complex, for several reasons: it varies by histotype; it depends strictly on the expertise of professionals; it often makes use of a few approved therapies that should be used according to criteria of molecular and clinical predictivity, based on experience; it requires sharing the patient with other healthcare facilities; it often requires the use of clinical trials; it may require off-label drug requests, based on clinical and molecular knowledge of rare tumors.
  All this in addition to having a negative impact on patients, healthcare structures, and the community in general.

• The need for centralization of rare cancer treatment and research in advanced and high-volume centers is unconditional, because the increased experience, mature skills, and ability to carry out research projects and generate data all translate into greater protection for the patient. Centralization has been a focus of attention of the Ministry of Health and the European Commission in order to improve patient outcomes and encourage research.
  
  

Local background

Research on rare cancers has a high added value, but it must include extremely coordinated, constant, and multidisciplinary work to achieve tangible and impactful goals. Currently, the University of Bologna has the relevant know-how, both at the Policlinico S. Orsola and at other metropolitan health facilities, consisting of biological researchers, pathologists, and clinicians who collaborate with each other and with national and international structures. However, if the skills are disconnected from each other, there is a potential for diminished care and science, with the risk of not achieving the desired results. The Policlinico S. Orsola has received the designation of European reference center within the ERN EURACAN, network of the European Commission dedicated to rare cancers. It is the center of the National Rare Cancers Network of the Ministry of Health and a member of many cooperative scientific groups dedicated to rare cancers. These qualities make the center an ideal place for teamwork.

Objectives:

• Involve all professional actors currently working on rare tumors at the University of Bologna, the Hospital of S. Orsola, and other metropolitan health facilities;
• Create and manage effective local networks for interdisciplinary collaboration;
• Create national and international collaborations;
• Design and carry out basic, translational, and clinical research projects studying rare cancers;
• Implement fundraising actions;
• Promote a scientific, intellectual culture for rare cancers.