Developing a Model for the National Pediatric Cancer Registry

Farkhondeh  Asadi; Amir Hossein  Daeechin; Nahid  Ramezanghorban

doi:10.18502/ijpho.v15i4.19630

Farkhondeh Asadi Professor of health information management, Department of Health Information Technology and Management, School of Allied Medical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran
Amir Hossein Daeechin M.Sc. in health information technology, Student Research Committee, Department of Health Information Technology and Management, School of Allied Medical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
Nahid Ramezanghorban Assistant professor of health information management, Department of Development and Coordination of Scientific Information and Publications, Deputy of Research and Technology, Ministry of Health and Medical Education, Tehran, Iran.

DOI: https://doi.org/10.18502/ijpho.v15i4.19630

Keywords: Data management, Information system, Neoplasms, Pediatrics, Registries

Abstract

Background: A pediatric cancer registry is a crucial tool for collecting and managing health care data. The development of a national registry model for pediatric cancer is vital for organizing and overseeing data effectively. This study aimed to develop a model of the national pediatric cancer registry in Iran.

Materials and Methods: This study is an applied type. In the first phase, a systematic search was conducted across the PubMed, Web of Science, and Scopus databases. Additional grey literature was also explored through targeted Google searches. Some keywords related to pediatric cancer and registry were used to extract components for a national pediatric cancer registry model. Colombia, Denmark, China, and Indonesia were selected for a comparative study due to their comprehensive registry information, emphasis on registry processes, and geographical diversity. In the second phase, the proposed national pediatric cancer registry model was presented. In the third phase, the model was validated through a two-step Delphi technique using a questionnaire.

Results: This study identified key components of a national pediatric cancer registry. Four main components, including general information, organizational structure, content, and registry process, were identified as the main components of the national pediatric cancer registry model in Iran. Using a two-stage Delphi technique, 37 model components were systematically reviewed, and the final approval was achieved with the consensus of all the experts.

Conclusion: The proposed model establishes a robust informational infrastructure to enhance the collection, management, and oversight of pediatric cancer data nationally. It is expected to improve survival monitoring and the quality of care, although further research is essential to evaluate its real-world effectiveness in Iran.