REPCAN: Guideline for REporting Population-based CANcer Registry Data

Document Type : Research Articles

Authors

1 Golestan Research Center of Gastroenterology and Hepatology, Golestan University of Medical Sciences, Gorgan, Iran.

2 Cancer Registry and Clinical Data Management unit, Shaukat Khanum Memorial Cancer Hospital & Research Center, Lahore, Pakistan.

3 Petrov Research Institute of Oncology, Saint Petersburg, Russian Federation.

4 Cancer Epidemiology and Population Health, Beat Cancer Project, University of South Australia, Adelaide, Australia.

5 Research Division, Health System Development, National Cancer Institute, Bangkok, Thailand.

6 Section of Cancer Information, the Global Initiative on Cancer Registry (GICR), the International Agency for Research on Cancer, Lyon, France.

7 Department of Healthcare Administration, Nagoya University Graduate School of Medicine, Nagoya, Japan.

8 Department of Epidemiology, School of Public Health and Safety, Shahid Beheshti University of Medical Sciences, Tehran, Iran.

9 National Centre for Disease Informatics and Research (NCDIR), Indian Council of Medical Research (ICMR), Ministry of Health and Family Welfare, Nirmal Bhawan ICMR Complex (II Floor), Poojanahalli, Kannamangala Post, Bangalore 562 110, India.

10 Department of Community Medicine, Maharajgunj Medical Campus, Institute of Medicine, Tribhuvan University, Maharajgunj, Kathmandu, Nepal.

11 Department of Health, Medical School, Shahid Beheshti University of Medical Sciences, Tehran, Iran.

12 Center for Epidemiology and Cancer, West Asia Organization for Cancer Prevention, Sabzevar University of Medical Sciences Sabzevar, Iran.

Abstract

Background: The objective of this study was to develop a guideline on how to report result of a population-based cancer registry. Methods: The guideline’s development involved a core working committee and a scientific committee comprising experts from diverse domains. The process comprised three steps: 1) a comprehensive review of existing tools and guidelines and the development of the initial draft of the guideline based on a review of literature, 2) refinement items through several rounds of focus group discussion among the core group, and development initial draft, and 3) Evaluation of the initial draft by scientific committee members. Items in the guideline were organized to accommodate reports of population-based cancer registries as a scientific manuscript. Results: The core committee developed 47 items distributed in the major heading of a scientific manuscript presented as a checklist. The evaluation of the scientific committee led to a consensus on the majority of the items included in the checklist. Among 10 committee members, 7 provided unreserved approval, validating each item’s necessity, applicability, and comprehensibility in the checklist. Feedback from the remaining 3 members was carefully analyzed and integrated to enhance the guideline’s robustness. Incorporating feedback, a first final draft was presented in a meeting of scientific and core working committee members. Collaborative discussion ensured clarity of expression for each items and a final checklist was developed. Conclusion: The guideline abbreviated as REPCAN offers a standardized framework for reporting population-based cancer registry, fostering transparency, comparability, and comprehensive data presentation. The guideline encourages flexibility while promoting comprehensive and robust reporting practices.

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