My family has been personally touched by Pulmonary Hypertension. In 2005, my mother was diagnosed with PAH. PAH makes it extremely difficult to breathe, turning everyday tasks -- such as taking a shower, preparing a meal, or doing the laundry -- into massive challenges.
GO PHAR Research is a virtual walk, to benefit the new Pulmonary Hypertension Association Registry (PHAR).
GO PHAR Research supports the continued rollout of PHAR into the Centers of Comprehensive Care accredited Pulmonary Hypertension Care Centers initiative.
Many of the past PH registries were privately funded to answer specific questions. PHAR, with contributions from the PH Community and with information from the PHCC accredited centers, will track diagnostic and treatment patterns at a national level, ultimately demonstrating quality improvement for the care of PH patients at these institutions.
PHAR will have the capacity to unveil current practice patterns, trends and evaluate patient outcomes with new and different types of combination treatments, where there is limited information. We believe it will especially benefit children with PH (where we lack studies, trials and FDA approvals. In addition to PHA’s annual publications relaying key findings, any stakeholder (physician, researcher, or group) is eligible to ask questions of PHAR to support and guide research. PHAR will provide information that may allow those affected by PH to realize a positive life changing experience, and researchers the opportunity to develop new understanding of the disease and accelerate new research opportunities.