Development a National Minimum Data Set for Acute Rheumatic Fever / Rheumatic Heart Disease Registry in Iran

Abstract

Background: Rheumatic heart disease remains the major cause of morbidity and mortality among young people in developing countries.The age-standardized prevalence of Rheumatic Heart Disease (RHD) in Iran increased <5% from 1990 to 2013.The most cost-effective strategy to disease control is to provide secondary prevention using registry. The aim of this study was to develop a national Minimum Data Set (MDS) for creating a national registry for Iran. Materials and Methods:this cross‑sectional study, is combination of literature review, data collection from patients medical records, and expert panel approach to design this MDS. The panel consisted of 12 specialists from different universities of medical sciences with expertise in Infectious Diseases (Pediatrics and adults), Rheumatology, Cardiology and Health Information Management (HIM). Expert opinions were calculated using Content Validity Ratio (CVR). Data elements with a CVR of more than 0.56 were selected as the MDS of the registry. Results:Totally, 279 data elements were identified; Of which, 223 data elements were verified and 56 were rejected by experts. In addition, 89 data elements were added as essential by them. Finally, 312 data elements were selected as national MDS of ARF/RHD registry in Iran based. The final data elements divided into two categories: administrative and clinical with 2 and 12 sections, and 42 and 270 data elements, respectively. Conclusions:This developed MDS can be used for designing and recruiting national registry in this field with the aim of collecting all required data across the country, and to make policies for the optimal management of it.