Principal investigator at the Institute of Oncology Ljubljana: Primož Strojan PhD
Rare cancers represent 22% of all cancer cases registered yearly to the European community and which afflict 4 million Europeans every year. Although they represent nearly a fifth of all cancers their recognition within ERNs (European Reference Networks) remains insufficient.
Rare cancers are a complex group of diseases which afflict less than 6 people in 100.000. Taking into account their specific traits which distinguish them from other rare diseases the European committee recognized the need to give special attention to rare cancers. The main objective of the joint campaign is integration and management of rare cancers and any related problems in or within ERNs.
The objective of establishing a specific ERN (i.e. EURACAN) is to increase the effectiveness of diagnostics and treatment of these cancers as well as to raise awareness regarding their specificity in the European Community institutions and Member Countries.
The fundamental goals of ERN-EURACAN initiative are:
To encourage the organization of reference networks for rare cancer patient treatment in Europe with the aim to improve quality of patient management.
To disseminate the knowledge and recommendations of good practice on rare cancers, especially among general practitioners and pathologist in order to ensure their timely and correct identification and treatment
To identify and address obstacles faced by patients on the way to receive appropriate treatment
To encourage the regulatory bodies (decision-makers) to include stakeholders (researchers and patients) in development, approval and evaluation of new treatments for rare cancers
To encourage the use of alternative statistical methods in clinical research of rare cancers
To provide tools and establish frameworks that adequately promote a joint decision-making process (patient-doctor) in situations with a high degree of uncertainty, which is common practice in the treatment of rare cancers, and which will include patients as equal partners in treatment and research of rare cancers.
The Institute of Oncology Ljubljana joined the ERN-EURACAN initiative on 26.6.2017. Based on the number of annually treated cases it was selected to participate in 6 of 10 domains of the program with the knowledge and experience of its experts: sarcoma, rare tumors of the genitourinary tract, rare tumors of the gastrointestinal tract, endocrine cancers, rare tumors of the chest, and rare brain tumors.