pulmonary hypertension registry of kerala (prokerala) – rationale, design and methods

Background: Pulmonary hypertension (PH) is a disease associated with a high morbidity and mortality. There is paucity of data regarding PH from the developing countries including India. Idiopathic pulmonary arterial hypertension is the most important etiological factor in the western world, but PH secondary to rheumatic heart disease, chronic obstructive pulmonary disease and untreated congenital heart disease could well be the predominant causes in developing countries like India. The main objective of the PROKERALA study – Pulmonary hypertension Registry Of Kerala is to collect data regarding the etiology, practice patterns and one-year outcomes of patients diagnosed to have PH. Methods: The study is a hospital-based registry in the state of Kerala supported and funded by the Cardiological Society of India, Kerala Chapter. A total of 77 hospitals have agreed to participate in the registry. PH was defined as systolic pulmonary artery pressure derived by echocardiography of more than 50 mmHg (by tricuspid regurgitation jet) or mean PA pressure more than 25 mmHg obtained at cardiac catheterization. A detailed questionnaire is administered which includes the demographic characteristics, risk factors, family history, ECG data, 6 minute walk test distance, chest X ray findings and echocardiographic data. Details of PH specific therapy and one-year follow-up data are collected. From a preliminary survey in the region, we estimated that we will be able to collect 2000 cases over a period of one year.