Developing a minimum data set required to create a registry system for patients with vitiligo

Abstract

BackgroundVitiligo can be psychologically devastating and stigmatizing, with significant impacts on patients. As such, the early treatment and understanding of the profound psychosocial impact of this skin disease cannot be overstated. A standardized method of data collection with consistent definitions is a prerequisite for vitiligo management. Against this background, this study aimed to develop a minimum data set (MDS) for the vitiligo registry system. Materials and methodsThe study was conducted in four steps in 2020 in Iran. After a comprehensive literature review to find relevant resources in English, medical records of patients with vitiligo were examined to assess the status quo of the country. Then, a model was developed from the data obtained in the previous step and through interviews. To reach a consensus on the data items, the Delphi technique was applied using a questionnaire, and the mean of expert judgments on each data item was calculated. ResultsA total of 127 data elements were developed through two rounds of the Delphi technique. The MDS was divided into an administrative part with three sections and 18 data items, and a clinical part with seven sections and 109 data items. ConclusionThis study is the first step towards establishing a registry system for patients with vitiligo. Accurate identification of data items, such as MDSs, can be useful in establishing a vitiligo registry, planning, and improving the quality of patient care.