Preliminary PHA Registry Data

Since late 2015, 26 accredited CCCs (24 adult, two pediatric) have enrolled a combined total of over 300 patients into the PHA Registry (PHAR) and another 15 sites are completing different stages of the onboarding process. Data from the initial seven PHAR pilot sites, in addition to the first few rounds of PHCC accreditation, has already produced a number of academic contributions such as articles, abstracts, presentations, etc.

• American College of Chest Physicians (ACCP) 2016
  • A Cross-Sectional Assessment of Adherence to Expert Consensus Diagnosis and Treatment Guidelines by Comprehensive Care Centers Accredited by the Pulmonary Hypertension Association
• American Thoracic Society (ATS) 2016
  • Characterization of Centers Accredited by the Pulmonary Hypertension Association (PHA) in the Pulmonary Hypertension Care Centers (PHCC) Initiative During Programmatic Year One
  • Evaluation of Quality of Care and Quality of Life of Pulmonary Hypertension (PH) Patients Seen in PH Care Centers: Pulmonary Hypertension Association Registry (PHAR) Study Design
• American Thoracic Society (ATS) 2017
  • Characterization of Hispanics with Pulmonary Hypertension in the US: The Pulmonary Hypertension Association Registry
  • Determinants of Health Related Quality of Life in PAH: Data from the Pulmonary Hypertension Association Registry

Data from the registry encompasses multiple areas including, but not limited to: demographic characteristics, evaluation to diagnosis and treatment, and quality metrics. See for yourself some of the current data gleaned from the registry.

Are you at a PHAR participating program and interested in publishing data from the registry?

If you or any of your program staff are looking for additional opportunities to become more involved with PHCC or PHAR you can find more information in the PHA announcements section below.

To read more about PHAR, visit: https://phassociation.org/PHAR/.