Adults with uncorrected congenital heart disease (CHD) remains health burden in Indonesia. Most adults with CHD visit hospital due to signs and symptoms of pulmonary hypertension (PH) as complication of uncorrected CHD. The Jogjakarta COngenital HeARt Disease and Pulmonary Hypertension (COHARD-PH) registry is a registry of adults CHD in Indonesia in which the invasive hemodynamic is performed. This registry is conducted in Dr. Sardjito Hospital, Jogjakarta, Indonesia and was initiated in July 2012.
Jogjakarta COHARD-PH registry is a hospital, prospective cohort registry. It enrolls consecutive adult patients with CHD. The subjects fulfill the criteria: (1) > 18 years of age and (2) have been performed transthoracic echocardiography (TTE), transoesophageal echocardiography (TOE) and/or right heart catheterization (RHC) to confirm the CHD and PH. The enrollment has been conducted from July 2012 until October 2018.
As many as 887 patients have been enrolled. Of these, 79% patients are diagnosed as atrial septal defect, 13% as ventricle septal defect, 6% as patent ductus arteriosus, and 2% as tetralogy of Fallot. The majority (70%) of patients is in the age range of 18-40 years. The mean age of first diagnosed is 35.6±13.4 years. The TTE estimates 80.5% have probability of PH. The RHC, performed in 705 patients (79%), confirms that 77% subjects had developed pulmonary artery hypertension (PAH) (mPAP ≥ 25 mmHg, PCWP ≤ 15 mmHg). The closure of defects has been performed in 13% of subjects, whereas 27% of subjects are in medical treatment for PAH and contraindicated for defect closure. During follow-up, 90 subjects (10%) have died.
The Jogjakarta COHARD-PH registry is the first Indonesian adults with CHD and PH registry which includes invasive hemodynamic parameter. The prevalence of PH is high in this hospital-based registry. A significant number of subjects are contraindicated for CHD correction.
Keywords: adult congenital heart disease, pulmonary hypertension, hospital registry.