METRICS- Cancer Registry
What is REPCAN?
REPCAN, stands for “guideline for REporting Population-based CANcer registry data”, is an international, collaborative initiative of cancer registry personnel, epidemiologists, methodologists, statisticians, researchers and journal editors involved in the dissemination of population-based cancer registry data.
Aims and use of REPCAN
Access to valid and high-quality cancer data is the key indicator in cancer controlling programs all over the world. Population-based cancer registration (PBCR) is the standard method for producing epidemiologic data on cancer patients in a community. The number of PBCRs have shown rapid increasing trends, especially in low- and middle-income countries (LMIC) during recent decades. Complete and adequate reporting of PBCR data has pivotal role in providing valid and reliable evidences to researchers and health policy makers as the main stakeholders. They need to know what was planned (and what was not), what was done, what was found, and what the results mean. Development and implementation of a guideline on standard reporting of PBCR data by international experts may improve the quality of reporting the PBCR data.
PBCR reports may cover different aspects including designing, implementation and maintenance as well as different types of data including patients’ information, tumor characteristics and indices of data quality. The main aim of the REPCAN is to develop a checklist of items that should be included in PBCR reports and articles. In the initial revision of the REPCAN, we aim to focus on the most important, simple, and internationally acceptable items to be mentioned and focused in the PBCR reports. We aim to develop a simple and user-friendly framework on how to report the PBCR data well.
The REPCAN initiative should be considered as the initial step of an ongoing process, which will need revisions according to critique, comments and new evidence.
Title: Development of a quality assessment guideline (and tool) to critically appraise and improve the quality of manuscripts reporting cancer registry results.
Rational: As the number of registries has been growing in Asia, we, at APJCP, been receiving many manuscripts reporting initial/interim report of cancer registries. There are unrepresented variations in reporting quality and structure of such a manuscript. In the light of such a variations in reporting: and considering the specificities pertaining to cancer registry, there is a need to develop a consensus based guideline for an objective quality improvement/assessment for authors as well as reviewers, and editors evaluating these reports and manuscripts.
- To develop, validate and publish a valid, reliable, and consensus-based guidelinefor authors of cancer registry papers
- To provide an objective tool to evaluate manuscripts reporting cancer registry results for reviewers and editors evaluating these reports.
The road map to develop this tool (as a quality assessment instrument for reviewers and a quality improvement guideline for authors) includes five steps. A core working committee consisting epidemiologist and cancer registry experts will develop an initial draft and a scientific committee consisting of editors, and cancer registry experts will comment, evaluate, and improve the initial draft. The whole process of the development is consisted of 5 steps (detailed below). The core working committee involved in providing the first draft, managing scientific committee’s consensus and finalizing the guideline. The scientific committee members are directly involved in steps 2, 3 and 6 and indirectly in the entire development process. In addition, three independent reviewers/editors are involved in step 5 (evaluating the reliability of the tool). The details of all steps are listed as follows:
- Step one: A core working committee of four experts will develop the first draft of the guideline going through the following steps:
- Comprehensive review of available relevant quality assessment tools, (both generic and specific)
- Extracting important and relevant items from these tools and adapting these items in order to develop the guideline’s specific items.
- Developing new specific items which may not be covered by previous tools.
- Holding several rounds of Delphi and online meetings to finalize the first draft of the tool, based on the selected items of steps b and c
- Step two: After developing the first draft, we will form a “scientific committee” including at least 10 editorial experts from different countries, various journals and international societies. The core working committee will coordinate and manage at least 2 (up to 4) rounds of Delphi with scientific committee members which aims to:
- Assessing the current items of the first draft of this tool, regarding some criteria such as necessity and applicability.
- Suggest any correction or revision to current items
- Suggest any new items to be added to the first draft
- Step Three: After collecting the scientific committee comments on the draft, the core working committee will provide a first final draft to be presented in an online meeting with all scientific and core working committee members to discuss on this version after a mini-workshop (to describe the consensus procedure). At the end of the meeting, all final corrections will be made and the semi-final version will be approved via the consensus of meeting members to be used in further surveys.
- Step Four: We will conduct an online survey of at least 50 reviewers on the semi-final version of this tool, to assess the face and content validity of the tool via a quantitative rating of each item (based on importance, clarity, etc) and a written comments and opinion if available. All questionnaires will be collected and summarized by analysis software along with qualitative content analysis of open written comments. Considering the results of this step, this tool will be revised again by the core working committee and a new revised tool will be developed.
- Step five: The final suggestions to finally revise this tool will be provided to prepare the final version of this tool. Inviting scientific committee members, another online meeting will be held, and all final changes are presented in this meeting. At the end of this meeting, the final tool will be approved by all members of both committees (core working and scientific). The final tool, along with the results of this multiphase study, will be published by authorship of all both committee members and three independent reviewers.
The Core working group team:
Gholamreza Roshandel, MD Ph.D. (Golestan Research Center of Gastroenterology and Hepatology, Golestan University of Medical Sciences, Gorgan, Iran
Farhana Badr, MD Ph.D., Shaukat Khanum Memorial Cancer Hospital & Research Center, Lahore, Pakistan.
Alireza Mosavi jarrahi, Ph.D. MSPH, Editor in chief, Asian Pacific Journal of Cancer Prevention, Associate Prof. of Epidemiology, Medical School, Shahid beheshti University of Medical Sciences, Tehran, Iran
Interim Scientific Committee Members:
Tomohiro MATSUDA, Ph.D., President, International Association of Cancer Registries., National Cancer Registry Section, Center for Cancer Registries, Tokyo 104-0045, Japan.
Prof. David Roder, Ph.D., Professor of Cancer Epidemiology, Chair Cancer Epidemiology and Population Health, Beat Cancer Project, University of South Australia, Adelaide, Australia
Suleeporn Sangrajrang, Ph.D., Research Division, Health System Development, National Cancer Institute Bangkok, Thailand
Pongdech Sarakarn, Ph.D., Epidemiology and Biostatistics Department, Faculty of Public Health, Khon Kaen University, Thailand
Manami Inoue, MD, PhD, Chief, Division of Prevention, Center for Public, Health Sciences, National Cancer Center Japan, 5-1-1 Tsukiji, Chuo-ku, Tokyo, 104-0045 Japan
Less Mery, Ph.D., Section of Cancer Information, the Global Initiative on Cancer Registry (GICR), International Agency for Research on cancer, Lyon France
Anton Barchuk, MD, PhD., Petrov Research Institute of Oncology, Saint Petersburg, Russian Federation.
Nobuyuki Hamajima, MD, PhD, Department of Healthcare Administration, Nagoya University Graduate School of Medicine, Nagoya, Japan
The guideline is under development. A interim copy of the suggested items can be downloaded from here. Guideline-Version-1-Cancer-Registry-not-final-version
You can comment the guideline by sending an email to “Guideline.firstname.lastname@example.org”