The Pulmonary Hypertension Association (PHA) will present two abstracts with data from the PHA registry, which collects information on pulmonary hypertension (PH) patients diagnosed and evaluated at PHA-accredited centers with the goal of improving their care.
The presentations will be given at the American Thoracic Society meeting set for May.
PHA launched its accreditation program for specialty Pulmonary Hypertension Care Centers (PHCC) in September 2014, to improve the care of PH patients and measure those improvements. Currently, 41 adult and six pediatric sites are accredited as Comprehensive Care Centers (CCCs) in the U.S.
PHCC accreditation criteria are based on key measures of care, including the program’s overall commitment to patients, scope of services provided, and the expertise of its care teams. The goal is to provide better information to patients and medical professionals, improve the access to Centers with expertise in PH, and increase opportunities for research collaboration between Centers.
One year later, the accreditation program established the PHA Registry (PHAR), a patient registry platform that collects data from WHO Group 1 PH (pulmonary arterial hypertension or PAH) and WHO Group 4 PH (chronic thromboembolic pulmonary hypertension or CTEPH) patients who are starting evaluation and/or treatment at a PHCC.
Each PHAR site collects and enters patient-reported outcomes, including two health-related quality-of-life surveys, as well as data such as to exact diagnosis and hospitalization rates. Each center is able to access real-time data, enabling it to compare its performance to others in the registry.
Data from the registry is used to evaluate outcomes for people with PH, and to help researchers and health professionals to better understand the disease, opening the possibility to new treatments and improved quality of care.
The first 16 CCCs participating in PHAR have collected information on nearly 200 patients, providing useful input on care strategies, and that data will form the basis of the May presentations. Ten other accredited CCCs are now in the start-up phase for joining the registry platform.
PHA also announced that it will soon start accrediting Regional Clinical Programs (RCPs) as part of the PHCC network, and offering then access to PHAR. RCPs are care providers qualified to diagnose and initiate first-line treatment in PH patients, sometimes collaboratively managing these patients with the assistance of accredited CCCs.
“PH is complex and can exist alone or in association with a number of other serious illnesses from heart disease to scleroderma,” Brad A. Wong, the chief executive officer of PHA/PHCC, said in a news release. “As our new accreditation program grows, more people living with PH are receiving appropriate diagnosis and treatment that can extend and improve their lives. Simultaneously, the new registry is collecting and tracking data that will help clinicians advance PH care as they learn more about treating the rare disease.”
PH corresponds to an increase of blood pressure in the pulmonary artery, pulmonary vein, or pulmonary capillaries, together known as the lung vasculature. Common symptoms can include shortness of breath, fatigue and chest pain. The disease is often misdiagnosed and treated as asthma or chronic obstructive pulmonary disease (COPD), a delay that could be costly. PH treatments can extend and improve the quality of life for many patients.