Determining the essential data elements of a comprehensive registry system for patients with leishmaniasis
Ahmadreza Shamsabadi, Aliasghar Neshat, Fateme Molaalinejad, Esmaeil MehraeenIntroduction
Standardizing patient data collection and analysis facilitates accurate reporting and enhances communication among healthcare teams. Given the high prevalence of leishmaniasis in specific geographic regions of Iran and the critical role of registry systems, this study aimed to identify the essential data elements required for developing a comprehensive registry system for patients with leishmaniasis.
Methods
This descriptive-applied study was conducted in 2024 in two phases: a literature review (2011-2024) to identify data elements for leishmaniasis, followed by expert consultation to prepare an initial draft of the minimum data set.
Results
A total of 60 data elements with a content validity ratio (CVR) ≥ 0.75 were confirmed and organized into 10 subgroups for the comprehensive leishmaniasis registry. The subgroups comprised: geographic location of registration; identity and demographic information; travel and changes of residence; characteristics of the patient’s dwelling; medical history and current medications; prior history of leishmaniasis; disease-specific information; laboratory data; therapeutic interventions; and follow-up of treatment discontinuation.
Conclusion
Considering the pivotal role of registry systems in disease management, prevention, treatment, and resource allocation, designing a comprehensive registry—particularly for endemic and region-specific diseases such as leishmaniasis is essential.