The Pulmonary Hypertension Association’s (PHA’s) patient registry reached a significant milestone this month with the enrollment of its 1,000th patient. The PHA Registry (PHAR) continues to expand its important role in improving pulmonary hypertension (PH) research, the patient experience and quality of care for those with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). Data is collected at 43 participating adult and pediatric PH Care Centers (PHCC) throughout the country.
PHAR is a multi-center, observational patient registry at participating PHA-accredited PHCCs that measures quality of care and the patient experience in newly evaluated patients with PAH or CTEPH, two forms of PH for which targeted treatments are available that can extend and improve patients’ lives.
PHAR centers collect information when a patient interested in participating is initially evaluated at the PHCC. They contribute information approximately every six months, allowing the PH community to understand how the disease impacts patients over time.
In addition to measuring quality of care – including assessing differences in centers’ adherence to evidence-based guidelines – PHAR helps determine the relationship between expert-recommended care strategies and patient outcomes. PHAR gives participating centers a platform to perform their own research and quality improvement, including access to their data in real-time through a center dashboard. External scientists can participate in research through the PHAR Data Analysis Service, launched in December 2018.
“PHA is excited about the progress of the PHA Registry and the dedication of study leadership, physician and nurse participants and patient willingness to join and contribute information,” says Michael Gray, PHA Vice-President of Quality Care and Research. “PHA looks forward to continuing its contribution to the field with new data analyses, seeking to improve patient care in the United States.”