Annual Report 2018

Rare Cancer Center

(NCCH) Akira Kawai, Yoshitaka Narita, Yasuji Miyakita, Shigenobu Suzuki, Seiichi Yoshimoto, Fumihiko Matsumoto, Kan Yonemori, Emi Noguchi, Kazuki Sudo, Yasushi Goto, Yoshitaka Honma, Takuji Okusaka, Chigusa Morizane, Susumu Hijioka, Motokiyo Komiyama, Aiko Maejima, Tomoyasu Kato, Mituya Ishikawa, Eisuke Kobayashi, Shintaro Iwata, Naoya Yamazaki, Kenjiro Namikawa, Koji Izutsu, Tatsuya Suzuki, Wataru Munakata, Chitose Ogawa, Ayumu Arakawa, Miyuki Sone, Hiroshi Igaki, Akihiko Yoshida, Noboru Yamamoto, Toshio Shimizu, Koichi Ichimura, Tadashi Kondo, Takahiro Higashi, Tomoko Takayama, Taro Shibata, Takuro Sakurai, Yoko Katoh,

(NCCHE) Naoto Gotohda, Tetsuo Akimoto, Ako Hosono, Toshihiko Doi, Yoichi Naito, Junya Ueno

Introduction

 The Rare Cancer Center was established in June 2014 as a multidisciplinary team to take measures against the innate problems associated with rare cancers. 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 new cases diagnosed as cancer when the number of each subtype of rare cancer is combined. Information on rare cancers have been lacking to date and this background makes it difficult for clinicians to diagnose rare cancer correctly and treat patients adequately. Another problem is the lack of experienced expertise 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:

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

2. Investigating the problems associated with rare cancers and taking up the issues and making proposals as medical professionals for rare cancers.

 To enable the Rare Cancer Center to play its role, a total of 46 medical doctors, researchers, nurses and medical staff dealing with rare cancers have joined as members of the center. Each member of the Rare Cancer Center provides specialized and high-quality medical care to patients with rare cancers, and promotes research of rare cancers by taking a multidisciplinary approach.

Research activities

1. Rare Cancer Center Conference

 Bi-monthly conference to discuss the problems of rare cancers in each department and other issues associated with rare cancers are held. We also interact with adolescent and young adult (AYA) patients with rare cancer to share their experience and uncover the problems associated with rare cancer.

2. Website and Facebook

 We have established a website of the Rare Cancer Center to transmit comprehensive, scientifically based, up-to-date unbiased information on rare cancers for patients and their family and health professionals fighting against rare cancers (http://www.ncc.go.jp/jp/rcc/). We have also launched another SNS, Facebook of the Rare Cancer Center since October 2017.

3. Rare Cancer Hotline

 We have established the Rare Cancer Hotline to provide consultation for patients with rare cancers and their family on the telephone. The number of consultations via Rare Cancer Hotline was 10,128 cases in 2018 (Figure 1).

Figure 1. The number of consultations via Rare Cancer Hotline in 2018

4. "Rare Cancer Meet the Expert" seminar

 To distribute up-to-date and reliable information on each type of rare cancer across the whole country, a seminar series called "Rare Cancer Meet the Expert" has been held since January 2017. The contents of the seminar have been distributed through the internet in cooperation with a nonprofit organization and an information-related company. A total of 800 participants attended the seminars in 2018.

5. Sarcoma Conference

 We have established a sarcoma group within the Rare Cancer Center to diagnose and treat sarcoma patients in a multidisciplinary manner. We held a monthly "Sarcoma conference" and discussed the treatment strategy for 36 patients with various types of sarcomas in 2018.

6. Basic / Translating Research

 We have promoted research on rare cancers. We especially focus on the establishment of patient-derived tumor xenografts or cell lines in cooperation with the National Cancer Center Research Institute.

7. Academia / Training

 We aim to share information on rare cancers and enhance the development of human resources of rare cancers through the conferences and seminars inside and outside the National Cancer Center.

Future prospects

 The Rare Cancer Center plays an important role in measures against rare cancers not only in the National Cancer Center but also throughout Japan. The Central Agency for Rare Cancers in Japan was assigned to the National Cancer Center in April 2018. The Rare Cancer Center will play the central role in the Agency.