National Registry for Pulmonary Arterial Hypertension, Chronic Thromboembolic Pulmonary Hypertension, and Pediatric Developmental Lung Disease-related Pulmonary Hypertension

What this Trial Is About

Researchers are collecting information on people with pulmonary arterial hypertension PAH and chronic thromboembolic pulmonary hypertension CTEPH through the Pulmonary Hypertension Association Registry PHAR. This study aims to understand how these patients are evaluated, diagnosed, and treated at specialized Pulmonary Hypertension Care Centers across the U.S. It also looks at how well patients do over time and whether care follows recommended guidelines, with a goal to identify factors influencing patient outcomes. Participants include those with newly diagnosed or existing PAH or CTEPH, as well as pediatric patients with Group 3 pulmonary hypertension related to developmental lung disease, all within six months of their first outpatient visit to a PH Care Center. The registry collects detailed data including diagnosis, clinical status, socioeconomic factors, test results, treatments, and social history. Participants are followed over time to update changes in therapy, hospital visits, and survival. Throughout the study, participants provide ongoing information on their health status and treatments. Researchers collect data on diagnosis tests, therapy changes, hospitalizations, and survival rates over a 10-year period. The registry helps monitor adherence to guidelines and evaluates clinical predictors of disease progression. This long-term observation may improve care by highlighting effective treatment practices and patient outcomes.

Pulmonary Hypertension Association Registry