Annual Report 2018
Center for Cancer Registries
Takahiro Higashi, Naoyuki Sato, Tomohiro Matsuda, Akiko Shibata, Kumiko Saika, Mariko Niino, Ayako Okuyama, Yoichiro Tsukada, Yoshiko Emori, Kaori Nakano, Rika Nabata, Mika Mizuochi, Saya Maruyama, Seiya Kondo, Shiho Matsuura, Asako Umeda, Tokiko Iguchi, Hiroko Okazaki, Emiko Enjoji, Tomoko Kobayashi
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 both 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 all hospitals in Japan to 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 firstly reported national incidence in the first year to the Ministry of Health, Labour and Welfare (MHLW).
We closely communicate with prefectures and continuously strive to improve our cancer surveillance system in Japan by holding two-day educational workshops for cancer registrars and administrative officers of prefectures overseeing cancer control in May (84 participants) and December (119 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 link them with the current data in the NCRS. Forty-five registries had introduced the PBCRDS as of March 2019. An external audit on information security in cancer registration was performed by commissioning to 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.
2. Hospital-Based Cancer Registries
The Hospital-Based Cancer Registry (HBCR) has become a key component to evaluate cancer care in hospitals and also provided a data frame for population-based registries. Once submitted directly to the Center, the HBCR data helps 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 playing a key roles in the region to operate HBCR in accordance with National Guidelines. The National Guidelines state that the Center should set the standards for the HBCR nationwide and produce national statistics for cancer care so that patients can choose hospitals and the government can enhance cancer control activities. The HBCR has been cancer control activities. The HBCR has been performed at 434 designated cancer care hospitals (DCCHs) and 338 others, including 15 designated hospitals for childhood cancer. Individual records for 712,471 cancer cases diagnosed in 2016 were collected from 434 DCCHs. To implement the 8th edition of the newly published UICC TNM classification rules and the latest version of the SEER multiple primary rules, the Center convened several expert committee meetings to define the detailed rules and standards for HBCR and educate cancer registrars at the hospitals, then updated and distributed the standardized software "Hos-CanR Next" to incorporate these changes.
To ensure data quality, we organized a series of education programs for cancer registrars, comprising 13 one-day continuous education session for 1,526 participants and four one-week programs for new applicants for intermediatelevel registrars. Following the qualification exam 371 beginner-level and 186 intermediate-level cancer registrars were newly certified.
Research activities
National cancer incidences in 2015 were calculated based on data from all 47 cancer registries, with the figure indicating the additional collective incidence for 47 prefectures. The incidence data were then analyzed in detail by cancer site and age group, published in international academic journals, presented at conferences both in Japan and abroad and disseminated via the website and in the book titled "Cancer Statistics in Japan".
As a routine activity, international comparisons of cancer burden and survival rates were made based on the WHO mortality, GLOBOCAN and the cancer registry database and updated trend analysis of cancer incidence and mortality in Japan was conducted.
Hospital-based cancer registries are compiled at a national level in the Center and we produced an annual report for cases diagnosed in 2016 to improve cancer care nationwide. We also developed a web system to determine the number of registered cases in each hospital based on Hospital-Based Cancer Registry data, which can help patients or their families find the nearest hospital to their home.
The national database was used extensively in research activities, both within and outside the Center, while the Secondary Data Use Review Committee approved six proposals for data use.
Education
Prefectural cancer registry personnel and hospital-based cancer registrars were trained as mentioned above and in particular, the Center collaborated closely with 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 builds a new relationship with the International Agency of Research on Cancer (IARC) and other overseas institutions based on a bi-institutional memorandum of understanding.
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 access the hospital information they need efficiently, an interactive web site was launched showing the number of cases involved in each patient's treatment. The data is 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.