Annual Report 2023

Rare Cancer Center

(Tsukiji Campus) Akira Kawai, Yoko Katoh, Ayumu Arakawa, Hiroshi Igaki, Ayako Ishikawa, Mitsuya Ishikawa, Koji Izutsu, Shintaro Iwata, Hitomi Sumiyoshi-Okuma, Chitose Ogawa, Shingo Kawaguchi, Shosuke Kita, Yasushi Goto, Eisuke Kobayashi, Motokiyo Komiyama, Tadashi Kondo, Takuro Sakurai, Taro Shibata, Tatsunori Shimoi, Shigenobu Suzuki, Kazuki Sudo, Kuniko Sunami, Miyuki Sone, Kenjiro Namikawa, Satoshi Nara, Yoshitaka Narita, Susumu Hijioka, Hidekazu Hirano, Yoshitaka Honma, Aiko Maejima, Wataru Munakata, Chigusa Morizane, Yasushi Yatabe, Naoya Yamazaki, Noboru Yamamoto, Akihiko Yoshida, Yukihiro Yoshida, Seiichi Yoshimoto,

(Kashiwa Campus) Tetsuo Akimoto, Junya Ueno, Naoto Gotohda, Yoichi Naito, Ako Hosono

Introduction

 The Rare Cancer Center, established in June 2014, comprises expert health care providers from various units and provides state-of-the-art, optimal medical care for rare cancers. It also promotes cutting-edge research and treatment development, clarifies and addresses issues in medical care for rare cancers through medical care and research. The Rare Cancer Center plays an important role in measures against rare cancers, not only in the National Cancer Center but also all over Japan. The National Institute for Rare Cancers in Japan was assigned to the National Cancer Center in April 2018. Rare cancers are defined as those with an incidence < 6/100,000/year. Although each subtype of rare cancer is in itself rare, it accounts for up to 15% of all newly diagnosed cancer cases when the number of each subtype of rare cancer is combined. Information on rare cancers has been lacking to date, which makes it difficult for clinicians to diagnose rare cancer correctly and to treat patients appropriately. Another problem is the lack of experienced experts in the field of rare cancers.

The Team and What We Do

 The Rare Cancer Center has been playing a central role in the management of rare cancers in the National Cancer Center (NCC).

 The mission statements of the Rare Cancer Center are as follows.

I.  Establishing a vital network for diagnosis and treatment for rare cancers.

II.  Investigating the problems associated with rare cancers, addressing the issues and making proposals as medical professionals for rare cancers.

 The Rare Cancer Center provides specialized and high-quality medical care to patients with rare cancers and promotes research through a multidisciplinary approach. Monthly regular web-conferences are held between the Tsukiji and Kashiwa campuses to discuss issues in the treatment of rare cancers.

Research Activities

 To deliver information on rare cancers, a website for patients with rare cancers and their families (https://www.ncc.go.jp/jp/rcc/index.html) has been launched, and 410 new pieces of content were added in 2023. In addition, information is disseminated via Facebook to provide it in a timely manner, and 400 posts were made in 2023. Rare Cancer Leaflets for 54 subtypes of rare cancers were created and distributed.

 Since 2017, "Rare Cancer Meet the Expert", a seminar on rare cancers, has been held for patients and their families. In September 2022, it was relaunched as  an event entitled "Online Rare Cancer Meet the Expert," and in 2023, 24 seminars were held with 4,291 viewers. This accomplished 66,636 views. The cumulative number of views of the 313 videos was 1,183,159. A new project, "Rare Cancer Consultation Q&A,'' was held two times in 2023. This is a lecture in which the lecturer, a doctor involved in rare cancer treatment and research, answers questions from patients regarding diseases such as diagnosis and treatment in a general manner. We also held five seminars on rare cancer treatment in collaboration with nine patient advocacy groups.

 We promoted Cancer Awareness Month covering five rare cancers, including mesothelioma and lymphoma, in collaboration with the patient advocacy group.

 For the project "Research on rare cancers to generate and utilize evidence in patient care in rare cancers" funded by the Cancer Research and Development Fund, members of the Rare Cancer Center took a leading role in conducting research on understanding the status of medical treatment for rare cancers, information dissemination, and education. Also, in the project “Research on developing a nationwide for providing cancer information and consultation support for rare cancers” funded by the Ministry of Health, Labour and Welfare Grants-in-aid for Scientific Research program, the Rare Cancer Center worked toward maintaining a network of hospitals treating rare cancers that was consistent with the situation in each region of Japan. In 2022, the Rare Cancer Grant Program was established based on several donations to the Rare Cancer Center from people who supported its initiatives and actions. We called for applications for research funding and have subsequently supported 19 researchers conducting leading-edge research at the Rare Cancer Center.

Future Prospects

 As the National Institute for Rare Cancers in Japan, our missions are to develop networks connecting patients and healthcare providers across the nation, to promote extraordinary patient care, scientific research, and education on rare cancers. Tuning into the issues faced by all rare cancer patients, we address them from a global perspective.