Annual Report 2021

Center for Cancer Registries

Takahiro Higashi, Naoyuki Sato, Hiroshi Nishimoto, Akiko Shibata, Ayako Okuyama, Yoichiro Tsukada, Manami Fujishita, Jun Umezawa, Mariko Niino, Naoki Sakakibara, Yoshiko Emori, Saya Maruyama, Seiya Kondo, Mika Maeda, Shiho Matsuura, Yuka Takahashi, Saori Uenishi, Mika Mizuochi, Kayoko Kobayashi, Riko Makoshi, Emiko Enjoji, Kana Ujiie, Makiko Inoue, Naoko Takahashi and Mari Watabe

Introduction

 The Center for Cancer Registries is in charge of operating public cancer registries to provide the public with accurate cancer incidence and survival statistics. The Center operates population-based cancer registries (the National Cancer Registry) and hospital-based cancer registries according to new legislation, the Cancer Registry Promotion Act.

The Team and What We Do

1. Population-Based Cancer Registries

 The Cancer Registry Promotion Act of 2013 created a new structure called the National Cancer Registry, which mandates that all hospitals in Japan submit basic data to prefectures when they diagnose new patients with cancer. The Center developed an online National Cancer Registry System (NCRS), through which we collect this information from the 47 prefectures. The system started in 2016, and we reported national incidence rates in 2019 to the Ministry of Health, Labour and Welfare (MHLW). In March 2022, the NCRS was updated and moved to a cloud environment to improve the processing performance and operability of the system. In addition, in order to reduce duplication of registration work at hospitals, the basis for standardizing notification rules was established. For providing cancer registration information, we have introduced an electronic application system to promote utilization and streamline operations. We also started a service for data use for research purposes in 2018, and 22 researchers were provided with an individual dataset in 2021.

 We closely communicate with the prefectures and continuously strive to improve our cancer surveillance system in Japan by holding remote educational workshops for cancer registrars and administrative officers of prefectures overseeing cancer control in May (93 participants) and December (82 participants). The Population-Based Cancer Registry Database System (PBCRDS), owned by the Center, enables the prefectures to maintain cancer registry data for past years and to link them with the current data in the NCRS. Forty-five registries have introduced the PBCRDS as of March 2022. An external audit on information security in cancer registration was performed by commissioning the cancer registry professional organization. The Center distributes a simplified cancer registry system, “Hos-CanR Lite” to hospitals that submit dates only to the National Cancer Registry.

Table 1.Cancer Patient Data in Hospital-Based Cancer Registries

2. Hospital-Based Cancer Registries

 The Hospital-Based Cancer Registry (HBCR) has become a key component in evaluating cancer care in hospitals and has also provided a data frame for population-based registries. Once submitted directly to the Center, the HBCR data help form a national database of hospital-based cancer registries and generate national cancer statistics geared more towards clinical aspects than population-based cancer registries. The Cancer Registry Promotion Act encourages hospitals specialized in cancer care or those playing key roles in the region to operate the HBCR in accordance with the National Guidelines. The National Guidelines state that the Center should set the standards for the HBCR nationwide and produce the national statistics for cancer care so that the patients can choose hospitals and the government can enhance cancer control activities. The HBCR has been performed at 453 designated cancer care hospitals (DCCHs) and 413 others, including six designated hospitals for pediatric cancer. Individual records for 1,040,379 cancer cases diagnosed in 2020 were collected from 863 hospitals.

 To ensure data quality, we organized a series of education programs for cancer registrars. Approximately two hours of e-learning training were conducted for those certified as beginner or intermediate cancer registrars, and 984 and 843 individuals participated in the training sessions, respectively. A total of 405 individuals took the renewal examination for beginners, with 390 passing, and 324 individuals took the renewal examination for the intermediate level, with 313 passing.

 In addition, freely viewable e-learning videos were provided to those intending to obtain the beginner certification in cancer registration practice, and 714 individuals were certified through the beginner certification exam. In addition, an 18-hour e-learning training course was provided for those seeking intermediate-level certification, and 185 were certified through the intermediate-level certification examination.

 In addition, an online training program for data analysis for cancer registrars was held.

Research activities

 The incidence data from 2018 was published based on the National Cancer Registry, which covers all 47 prefectures, and was analyzed in detail according to cancer site and age group. The results were published in international academic journals, presented at conferences both in Japan and abroad, and posted on the website in a national report, "Cancer Statistics of Japan".

 Hospital-based cancer registries are compiled at the national level in the Center. To improve the quality of cancer care nationwide, we produced an annual report for cases diagnosed in 2020. In addition, we analyzed the actual number of cases in the national cancer registry during the novel coronavirus epidemic and published the results.

 The national database was used extensively in research activities both within and outside the Center, while the Secondary Data Use Review Committee approved two proposals for data use.

Education

 Prefectural cancer registry personnel and hospital-based cancer registrars were trained as mentioned above; in particular, the Center collaborated closely with the NCC hospitals to educate intermediate-level cancer registrars.

Future Prospects

 We plan activities to improve the operation of the National Cancer Registry (NCR) on an ongoing basis. Working with the National Cancer Center’s International Affairs Section, the Center is building a relationship with the International Agency of Research on Cancer (IARC) and other international institutions based on bi-institutional memoranda of understanding.

 The hospital-based cancer registries continue to evolve and close monitoring of the care provided to cancer patients in Japan enables better access to quality care. To enable cancer patients and their families to efficiently access the hospital information they need, an interactive website was launched showing the number of cases involved in each patient’s treatment. The data are used for all aspects of cancer control activities, including hospital designation, organization of a care structure for rare cancer patients and quality monitoring of care.