Providing a framework for evaluation disease registry and health outcomes Software: Updating the CIPROS checklist

Properly designed and implemented registry systems play an important role in improving health outcomes and reducing care costs, and can provide a true representation of clinical practice, disease outcomes, safety, and efficacy. Therefore, the aim of this study was to redesign and develop a checklist with items for a patient registry software system (CIPROS) Checklist.

The study is descriptive-cross-sectional. The extraction of the data elements of the checklist was first done through a comprehensive review of the texts in PubMed, Science Direct and Scopus databases and receiving articles related to the evaluation of registry systems. Based on the extracted data, a five-point Likert scale questionnaire was created and 30 experts in this field were asked for their opinions using the two-step Delphi method.

A total of 100 information items were determined as a registry software evaluation checklist. This checklist included 12 groups of software architecture factors, development, interfaces and interactivity, semantics and standardization, internationality, data management, data quality and usability, data analysis, security, privacy, organizational, education and public factors.

By using the results of this research, it is possible to identify the defects and possible strengths of the registry software and put it at the disposal of the relevant officials to make a decision in this field. In this way, among the designers and developers of these softwares, the best and most appropriate ones are selected with the needs of the registry programs.