Pathlight Summer 2016 - (Page 27)

HEALTH MATTERS GO PHAR RESEARCH GOing the Distance for PHAR Research By Olivia Onyeador, MHA, PHCC Program Manager S ummer 2016 marks a momentous period of transition for the PH Care Centers (PHCC) program, the landmark quality improvement initiative launched by the Pulmonary Hypertension Association (PHA) to bolster and fortify the best practices and standards of care in the treatment of patients with pulmonary hypertension (PH). One of the requirements for a Center to be accredited as a PHCC is to enroll PH patients into the Pulmonary Hypertension Association Registry (PHAR). PHAR will collect data from WHO Group 1 PH (pulmonary arterial hypertension [PAH]) and WHO Group 4 PH (chronic thromboembolic pulmonary hypertension [CTEPH]) patients who are starting evaluation and/or treatment at a PHCC. Over time, PHAR will help researchers evaluate trends and practice patterns to determine which treatments work best. With the completion of the PHAR Pilot Site Program (Fall 2015 to Spring 2016), the first wave of accredited PHCCs has received approval to begin enrolling patients. The PHAR Committee, in conjunction with the Data Clinical Coordinating Center at the University of Washington, has already helped to lay the groundwork for PHAR processes and structure, but the question of how to create sustainable funding has long been a topic of discussion. As a result, the PHCC sustainability committee, co-chaired by Joe Gilbertson (PH advocate and caregiver), was formed with the goal of finding and creating new sources of revenue to support PHAR. Special Events to the Lead the Way In May 2015, Colleen Brunetti, a member of the PHA Board of Trustees hosted "An Evening With Jay Leno," a fun-filled event starring television personality Jay Leno, with proceeds going towards the development of PHAR. October 2015 kicked off with Dr. Michael and Bonnie McGoon's "Reach for the Stars!" gala, a biennial event that contributed a portion of its proceeds that year to PHAR. That same month saw the launch of "Walking PHAR," a health-based event designed to raise money and awareness of the registry. The brain-child of Diane Ramirez, a PH patient and PHCC Oversight Committee member, "Walking PHAR" emphasizes her personal goal of walking 75 miles in 30 days. The dedication of Diane, Colleen and Joe inspired PHA staff member Michael Knaapen's "Running Far for PHAR," through his participation in the April 2016 Gettysburg Marathon. Utilizing ideas from Diane's "Walking PHAR" initiative, the PHCC Sustainability Committee established a nationwide fundraising event that will allow for greater engagement throughout the PH community. What resulted was "GO PHAR Research." Forging a unique partnership with Withings®, a health and wellness consumer electronics company, "GO PHAR Research" deviates from traditional walk-a-thon events by utilizing the Withings® GO activity tracker to record participants' steps. PHA Conference 2016 attendees with their "GO PHAR Research" activity trackers. Here's how you can get involved: * Visit to register. Pledge to raise $100 or more, select the color of your Withings® GO activity tracker and look for it in your mail. * Set up your virtual fundraising page and begin collecting donations from friends and family, then take the next step and form a team. Success of "GO PHAR Research" is measured by the amount of funds you raise, not the number of steps you record. Since the PHCC program was established to improve management and diagnosis of PH, the ability to fund and sustain PHAR remains crucial to the quest for a cure. The registry is designed to: * Lead to an updated understanding of the natural history of the disease in accredited centers; * Gather data to inform healthcare professionals on how to better manage complex patients; and * Increase knowledge on the cause and progression of the disease Learn more To learn more about the PHA Registry (PHAR), please visit PHA Classroom to view the November 2015 webinar: cfm?ItemNumber=5395 ( Additional information can be found at PHAR and WWW.PHASSOCIATION.ORG 27 http://WWW.PHASSOCIATION.ORG

Table of Contents for the Digital Edition of Pathlight Summer 2016

Message from the Chair
Message from the SLC Chair
Quick Takes
PHenomenal Lives
Family PHocus
A Day in the Life of a PH Physician
Research Corner
GO PHAR Research
Ask the Expert: Post-PE Monitoring
End-of-Life Conversations: Tough Questions & Important Answers
Lantos Highlight
Conference & Leadership Changes
Chapter News
Advocacy PHact or PHiction? Test Your Knowledge of PH Advocacy
Calendar of Events
Question of the Quarter:

Pathlight Summer 2016