Annual Report 2021
Rare Cancer Center
(Tsukiji Campus) Akira Kawai, Yoko Katoh, Ayumu Arakawa, Hiroshi
Igaki, Mituya Ishikawa, Koji Izutsu, Shintaro Iwata, Chitose
Ogawa, Takuji Okusaka, Tomoyasu Kato, Shingo Kawaguchi, Yasushi
Goto, Eisuke Kobayashi, Motokiyo Komiyama, Tadashi Kondo, Takuro
Sakurai, Taro Shibata, Toshio Shimizu, Tatsunori Shimoi, Shigenobu
Suzuki, Tatsuya Suzuki, Kazuki Sudo, Miyuki Sone, Tomoko Takayama,
Kenjiro Namikawa, Yoshitaka Narita, Takahiro Higashi, Susumu
Hijioka, Yoshitaka Honma, Aiko Maejima, Yasuji Miyakita, Wataru
Munakata, Chigusa Morizane, Naoya Yamazaki, Noboru Yamamoto,
Akihiko Yoshida, Seiichi Yoshimoto, Kan Yonemori
(Kashiwa Campus) Tetsuo Akimoto, Junya Ueno, Naoto Gotohda,
Toshihiko Doi, Yoichi Naito, Ako Hosono
Introduction
The Rare Cancer Center, which was established in June 2014 and comprises expert health care providers from various units, provides state-of-the-art, optimal medical care for rare cancers. It also promotes cutting-edge research and treatment development, and 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 rare by itself, 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 and this background makes it difficult for clinicians to diagnose rare cancer correctly and 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 and taking up 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 on rare cancers by taking a multidisciplinary approach. Monthly regular web-conference have been held between the Tsukiji and Kashiwa campuses to discuss issues in the treatment of rare cancers.
Research activities
A rare cancer hotline has been established to provide consultations for patients with rare cancers and their families over the telephone. The number of new consultations between April and September in 2021 was 5,023. The consulters lived from Hokkaido to Okinawa. Since October 2021, the Supportive Care Development Center has been in charge of the rare cancer hotline.
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 350 new pieces of content were added in 2021. In addition, information is disseminated via Facebook to provide it in a timely manner, and 400 posts were made in 2021. Rare Cancer Leaflets for 50 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 2021, the seminar could not be held due to COVID-19, and only video streaming was available. The total view count for all videos was 477,992. We also have prepared a “Rare Cancers Library” which consists of 15 videos for the purpose of delivering timely information to patients quickly and efficiently. This accomplished 12,183 views. We also held eight seminars on rare cancer treatment together in collaboration with six patient advocacy groups.
We promoted Cancer Awareness Month covering four rare cancers, including mesothelioma and lymphoma, in collaboration with the patient advocacy group.
We promoted cancer awareness month covering four rare cancers, including sarcoma and lymphoma, in collaboration with the patient advocacy group.
In the project “Research on understanding the status of medical treatment and development of infrastructure to improve the outcomes of rare cancers” funded by the Cancer Research and Development Fund, members of the Rare Cancer Center took the 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 network 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 in line with the situations in each region in Japan. In 2021, 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 subsequently supported 19 researchers conducting leading-edge research at the Rare Cancer Center.
In addition, in collaboration with the National Cancer Center Research Institute, we conducted research on the development of xenografts and establishment of cell lines from clinical specimens of rare cancers.
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 with a global perspective.
List of papers published in 2021
Journal
1. Doi T, Kuboki Y, Naito Y, Ishida M, Tanaka T, Takeuchi Y. A phase 1 trial of xentuzumab, an IGF-neutralizing antibody, in Japanese patients with advanced solid tumors. Cancer science, 113:1010-1017, 2022
2. Doi T, Yamamoto N, Naito Y, Kuboki Y, Koyama T, Piao Y, Tsujimoto N, Asou H, Inoue K, Kondo S. Merestinib monotherapy or in combination for japanese patients with advanced and/or metastatic cancer: A phase 1 study. Cancer medicine, 10:6579-6589, 2021
3. Nishida T, Yoshinaga S, Takahashi T, Naito Y. Recent Progress and Challenges in the Diagnosis and Treatment of Gastrointestinal Stromal Tumors. Cancers, 13:2021
4. Doi T, Tajimi M, Mori J, Asou H, Inoue K, Benhadji KA, Naito Y. A phase 1 study of crenigacestat (LY3039478), the Notch inhibitor, in Japanese patients with advanced solid tumors. Investigational new drugs, 39:469-476, 2021