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Center for Cancer Registries

Takahiro Higashi, Naoyuki Sato, Hiroshi Nishimoto, Tomohiro Matsuda, Akiko Shibata, Kumiko Saika, Mariko Niino, Ayako Okuyama, Yoshiko Emori, Kaori Nakano, Rika Nabata, Mika Mizuochi, Saya Maruyama, Seiya Kondo, Shiho Matsuura, Asako Umeda, Tokiko Iguchi, Hiroko Okazaki, Yuko Tanaka, Emiko Enjoji.

Introduction

Center for Cancer Registries is in charge of coordinating the operation and development of public cancer registries - national cancer registry (NCR, formerly prefectural population-based cancer registries) and hospital-based cancer registry. Both have their base on the Cancer Registry Act, which took effect in 2016. The law requires all hospitals in Japan to submit the basic data of newly encountered cancer patients to the national cancer registry. The first national cancer registry report under this system is expected to come out at the end of 2018 or the beginning of 2019. The national population-based cancer registry enables cancer control and research activities based on an accurate national data and statistics.

The hospital-based cancer registries (HBCRs) are operated in cancer care hospitals designated by Ministry of Health, Labour and Welfare as a condition of designation. The hospital registries are required to follow standards issued by the National Cancer Center. The HBCRs are more clinically oriented than the population-based registries and expected to function as an important infrastructure to monitor and improve quality of care at these hospitals. Many non-designated cancer care hospitals also maintain their hospital-based cancer registries.

The NCR and HBCRs complement each other; the population-based registry focuses on the complete coverage of incident cancer cases and statistical reporting over time so the items are design to be concise and regulated by law, while hospital-based registries are maintained only in relatively large hospitals, but they collect more clinical details by trained tumor registrars with flexibility in items to catch up with clinical practices.

Activities

1) Population-based Cancer Registries (National and Prefectural Cancer Registries)

The Division has continuously exerted efforts to develop a reliable cancer surveillance system in Japan, which is stated as a key element in the Cancer Control Act. The Division supports all these 47 registries, by disseminating up-to-date information through websites and mailing lists; by setting up a Q&A service; by holding 2-day educational workshops for cancer registrars and administrative officers in charge of cancer control who were new to their post in May; and organizing 2-day advanced educational workshops, attended by over 120 participants, in December. The Division also provided site visiting as part of the training for the Standard Database System (SDS), for promoting the protection of personal information, and for cancer registry start-up preparation. This activity supported a total of 17 prefectures this year. Forty-two registries had introduced the SDS as of January 2015. The self-check software on security control in cancer registration and security educational materials for new workers were updated and provided by the division. According to the Act on Promotion of Cancer Registry enacted in 2013, the division participated in preparations for establishment of the National Cancer Registry Data Center. Specifically, the preparation activities included advice for the Ministry of Health, Labour and Welfare, forming the materials and data for discussion, development of the National Cancer Registry System, checking the data of the current regional cancer registries, and visiting prefectures for giving explanations about the act.

2) Hospital-based Cancer Registry (HBCR)

The operation of HBCR is mandated in all designated cancer care hospitals (DCCH) and also, the Cancer Registry Act encourages all specialized cancer hospitals to operate hospital-based cancer registries. In the report of 2015 cases, 427 DCCHs and 318 other hospitals submit their data for the report. In total, it is estimated that about 80% of the incident cases in Japan is covered by the HBCR report. The Center lead the compilation of data and production of such reports.

Also, under the Health Ministry Guidance for HBCR, the Center are expected to set the standards for the operation of the hospital-based registries. Starting 2016 cases, HBCR collects 99 items including patient, cancer, and first-course treatment information as well as route of arrival. The Center organizes a specialized committee to discuss the details of the rules and standards of the hospital-based cancer registration.

To ensure and improve the data quality, the Center organizes training programs for tumor registrars. These programs include a week-long  workshops for experts in Tokyo (4 times per year), and e-learning programs for beginners, and data analysis workshop. The Center also provide certification examinations for tumor registrars..

Research activities and development

The national cancer incidences in 2012 were estimated based on the data from 47 cancer registries, covering all prefectures. The prefectures that meet the data quality standards increased since last year. The incidence data were then analyzed in detail by the cancer site. The study results were published in an international journal. The cancer incidence data have been used in a couple of research analyses; the results are presented at conferences both in Japan and abroad.

International comparisons of cancer burden and survival rate were conducted based on the WHO mortality, GLOBOCAN, and cancer registry database.  Descriptive analysis was also conducted for myelodysplastic syndrome in Japan.

Education

Our activities of extramural education were executed as mentioned above.

 

Future prospects

We will start the National Cancer Registry (NCR) in the National Cancer Center (NCC), which will be implemented in January 2016, based on the activities of the project team.

List of papers published in 2015

Journal

  1. Saika K, Machii R. Five-year relative survival rate of brain and other nervous system cancer in the USA, Europe and Japan. Jpn J Clin Oncol, 45:313-314, 2015
  2. Machii R, Saika K. Morphological distribution of esophageal cancer from Cancer Incidence in Five Continents Vol. X. Jpn J Clin Oncol, 45:506-507, 2015
  3. Saika K, Matsuda T. Morphological distribution of ovarian cancer from Cancer Incidence in Five Continents Vol. X. Jpn J Clin Oncol, 45:793, 2015
  4. Matsuda T, Machii R. Morphological distribution of lung cancer from Cancer Incidence in Five Continents Vol. X. Jpn J Clin Oncol, 45:404, 2015
  5. Tanaka H, Matsuda T. Arrival of a new era in Japan with the establishment of the Cancer Registration Promotion Act. Eur J Cancer Prev, 24:542-543, 2015
  6. Niino M, Matsuda T. Morphological distribution of bladder cancer from Cancer Incidence in Five Continents Vol. X. Jpn J Clin Oncol, 45:999, 2015
  7. Matsuda T, Sobue T. Recent trends in population-based cancer registries in Japan: the Act on Promotion of Cancer Registries and drastic changes in the historical registry. Int J Clin Oncol, 20:11-20, 2015
  8. Matsuda T, Niino M. Morphological distribution of testis cancer from Cancer Incidence in Five Continents Vol. X. Jpn J Clin Oncol, 45:894, 2015
  9. Matsuda T, Hori M. Five-year relative survival rate of kidney and renal pelvis cancer in the USA, Europe and Japan. Jpn J Clin Oncol, 45:136, 2015
  10. Hori M, Matsuda T, Shibata A, Katanoda K, Sobue T, Nishimoto H, Japan Cancer Surveillance Research Group. Cancer incidence and incidence rates in Japan in 2009: a study of 32 population-based cancer registries for the Monitoring of Cancer Incidence in Japan (MCIJ) project. Jpn J Clin Oncol, 45:884-891, 2015
  11. Allemani C, Weir HK, Carreira H, Harewood R, Spika D, Wang XS, Bannon F, Ahn JV, Johnson CJ, Bonaventure A, Marcos-Gragera R, Stiller C, Azevedo e Silva G, Chen WQ, Ogunbiyi OJ, Rachet B, Soeberg MJ, You H, Matsuda T, Bielska-Lasota M, Storm H, Tucker TC, Coleman MP, CONCORD Working Group. Global surveillance of cancer survival 1995-2009: analysis of individual data for 25,676,887 patients from 279 population-based registries in 67 countries (CONCORD-2). Lancet, 385:977-1010, 2015
  12. Katanoda K, Hori M. Morphological distribution for cancer of the central nervous system from Cancer Incidence in Five Continents Vol. X. Jpn J Clin Oncol, 45:1096, 2015
  13. Katanoda K, Hori M. Morphological distribution of liver cancer from Cancer Incidence in Five Continents Vol. X. Jpn J Clin Oncol, 45:607, 2015
  14. Hori M, Katanoda K. Morphological distribution of thyroid cancer from Cancer Incidence in Five Continents Vol. X. Jpn J Clin Oncol, 45:1182, 2015
  15. Hori M, Katanoda K. Morphological distribution of cervical and corpus uteri cancer from Cancer Incidence in Five Continents Vol. X. Jpn J Clin Oncol, 45:697, 2015
  16. Hori M, Katanoda K. Five-year relative survival rate of lymphoma in the USA, Europe and Japan. Jpn J Clin Oncol, 45:233-234, 2015