The commencement of congenital heart diseases registry in Isfahan, Iran: Methodology and design

BACKGROUND: Reported prevalence of congenital heart diseases (CHDs) varies widely among studies worldwide. The incidence of CHD, total number of pediatric and adult grown-up congenital heart disease (GUCH), is not determined in Iran. Therefore, we have designed a system to register the information of patients with CHD for the first time in our country. METHODS: CHD registry is a database in which the patients' data are collected by five pediatric cardiologists from three referral hospitals affiliated to Isfahan University of Medical Sciences, Isfahan, Iran, and five outpatient clinics. We enrolled patients with CHD either as new cases who were referred for evaluation of potential CHD or those who were being followed within the outpatient clinics and entered their whole information in a website specifically designed for it. All the information was collected from checklist by those pediatric cardiologists RESULTS: From April 2017 to April 2020, after developing the forms and website, the Quality Control Committee evaluated the first 558 files. 73 files (13%) needed major revisions. Among them, 34 (46%) files were omitted totally and the 39 remaining files were revised and completed. After that revision, we changed our checklist and gathered about 1600 patients accordingly. CONCLUSION: Registry of CHDs not only improves epidemiologic studies but also assists researchers to understand how much a disease management is useful and how to raise the quality of cares and outcomes. Moreover, this provides a better insight for policymakers to understand the extent of health-related problems as well as the issues related to the prevention and management of CHDs all around the world.