Early Results of the Persian Registry of Cardiovascular Disease/Congenital Heart Disease (PROVE/CHD) in Isfahan

J Tehran Heart Cent. 2020 Oct;15(4):158-164. doi: 10.18502/jthc.v15i4.5941.

Abstract

Background: In 2016, a prospective registry for pediatric patients with congenital heart disease (CHD) was established in Isfahan, Iran. Data on pediatric CHD in Iran are scant; accordingly, we aimed to report the early results of the Persian Registry Of cardioVascular diseasE (PROVE/CHD) Registry in Isfahan. Methods: All patients with CHD and associated defects diagnosed by pediatric cardiologists were assessed via echocardiography for inclusion in the present study between late 2016 and August 2019. The participants' sociodemographic characteristics, maternal history, birth history, medical history, current clinical presentations in the clinic or hospital, paraclinical data, cardiac diagnoses based on the International Classification of Diseases, 10th Revision (ICD-10), disease management plans, and medications were entered into a questionnaire by the subjects' parents/legal custodians and physicians and then transferred to the PROVE/CHD Registry. Results: The PROVE/CHD registry encompasses 1252 patients with CHD (49.9% male) at a mean age of 6.50±6.36 years. The most frequent cardiac diagnoses were ventricular septal defect (39.3%), atrial septal defect (29.7%), patent ductus arteriosus (25.4%), pulmonary stenosis (11.0%), tetralogy of Fallot (6.1%), coarctation of the aorta (5.4%), and aortic stenosis (5.1%), respectively. The most frequent interventions were patent ductus arteriosus closure (4.3%), atrial septal defect closure (3.6%), pulmonary valvuloplasty (2.2%), coarctation of the aorta angioplasty (1.9%), and ventricular septal defect closure (1.1%), correspondingly. The approximate corresponding rates of corrective and palliative surgeries were 32.0% and 13.1%. The corrective surgeries were mainly comprised of ventricular septal defect closure (7.8%), patent ductus arteriosus closure (7.3%), atrial septal defect closure (5.1%), and tetralogy of Fallot repair (3.8%), respectively. The palliative surgeries mainly consisted of the Glenn shunt (9.0%) and pulmonary artery banding (3.6%). Conclusion: The PROVE/CHD Registry collects data on pediatric patients with CHD. The results of this registry can provide epidemiological data and a set of homogeneously defined cases for further studies.

Keywords: Disease management; Heart defects, congenital; Registries.