PHA Pathlight Winter 2015 - (Page 1)

A newsletter of the Pulmonary Hypertension Association 0 Winter 2015 0 Volume 24 No. 1 PATHLIGHT HIGHL IGHTS PHenomenal Lives Conversations in Caregiving Our Journeys 4 6 Health Matters 8 Ask a PH Specialist 8 PH Care Centers reviewers conduct the first Pilot Site visit at Inova Fairfax Hospital in February 2014. 3 Helpful Hints 13 Research Corner 14 Advancing the Cause 15 CTEPH Awareness 17 Advocacy in Action 20 Support Groups 25 Special Events 26 PHA Chapters 29 Community Classroom 33 e-Learning Guides 33 PHenomenal Youth 36 Family PHocus 37 New PHCC Patient Registry Will Boost Value of Accreditation Initiative A s interest in the PHA-accredited Pulmonary Hypertension Care Centers (PHCC) initiative grows within the medical community, a new element - the PHCC Patient Registry - has been conceived to further strengthen the value of the PHCC initiative. Recently approved by PHA's Board of Trustees, the PHCC Patient Registry is designed to collect data that point to best practices in the treatment of pulmonary hypertension. The expectation is that data collected through the registry will lead to improved quality of life for PH patients as well as prolonged survival. Still in the planning stage, when launched, the registry will track diagnostic and treatment patterns at a national level, and the data should lead to a better understanding of the impact of evidence-based guidelines on health outcomes. Patients from accredited PHCCs will be asked for their informed consent before their data is included in the PHCC Patient Registry. Only patients who are new to a PH Care Center will be included as a means of accruing more concrete, meaningful longitudinal data. The value of this initiative is clearly seen by Diane Ramirez, a PH patient and representative serving on the PHCC Oversight Committee. According to Diane, "It is very important for newly diagnosed patients to enter into research like the PHCC Patient Registry as soon as possible. The PHCC Registry will promote uniformity of care, improve a patient's quality of life, and foster research that could lead to a cure. As a patient myself, I couldn't ask for more." PHCC ARTICLE CONTINUED ON PAGE 10

Table of Contents for the Digital Edition of PHA Pathlight Winter 2015

PHA Pathlight Winter 2015