Pulmonary Hypertension Association Inc

Pulmonary hypertension association registry (phar): accredited phcc's have an opportunity to participate in phar as both a quality improvement process and research activity. A patient registry is an organized system that collects data to evaluate certain outcomes for a population of people with a medical condition and is a useful tool for quality improvement of care and for research of rare diseases such as ph. Phar collects data from who group 1 ph (pulmonary arterial hypertensionpah) and who group 4 ph (chronic thromboembolic pulmonary hypertensioncteph) who are starting evaluation and/or treatment at an accredited phcc. Data is collected in conjunction with routine ph care team visits approximately every 3-6 months. At the end of 2024, there were 96 accredited phcc's and 74 centers participating phar with 3,442 patients ever enrolled in phar.