Abstract 126P
Background
Rare cancers are defined as cancers with an annual incidence of <6 cases per 100,000 people. A questionnaire survey of patients with rare cancers and their families in Japan revealed that they have the following unmet medical needs: lack of accurate information (74%), delays in the development of medical treatment (66%), inaccuracy in diagnosis and treatment (63%), and difficulties in communicating with patients with the same disease (47%). The aim of this presentation is to introduce comprehensive efforts to address the multifaceted issues of rare cancers and sarcomas in Japan.
Methods
In 2014, a Rare Cancer Center was established at the National Cancer Center in Tokyo, and efforts to address various issues of rare cancers in Japan commenced. In 2017, a new multidisciplinary sarcoma association, the “Japanese Association of Sarcoma Treatment and Research” (JSTAR) was established, aiming to promote multidisciplinary treatment and research on sarcoma, a representative rare cancer. We will introduce efforts to address the multifaceted challenges surrounding these cancers in Japan, focusing on the activities of the Rare Cancer Center and JSTAR.
Results
We have implemented the following measures with the aim of solving unmet needs of rare cancers and sarcomas: (1) information provision: disease explanations on web site and a series of seminars titled “Rare Cancer Meet the Expert” have been developed by specialist doctors; (2) consultation support: telephone consultations with specialized counselors on our new “Rare Cancer Hotline”; (3) clinical development: a platform (basket/umbrella) trial with a registry study on the topic called the “Master Key Project”; (4) improvement of diagnostic accuracy: establishment of a national pathological diagnosis consultation system. In the JSTAR annual meeting, intensive and interdisciplinary discussions around sarcomas have reached beyond the borders of each clinical department and institution.
Conclusions
The issue regarding rare cancers cannot be solved by a single institution alone; to address it, extensive and continuous efforts by a multi-stakeholder network, including medical practitioners, patients, governments, and societies, are required.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
The authors.
Funding
National Cancer Center.
Disclosure
All authors have declared no conflicts of interest.