CEO Update: How Your Research Room Participation Advances PH Care

Dear PH community,

From the early days of the Pulmonary Hypertension Association (PHA), your participation in research and clinical studies have led to new understanding and treatment of pulmonary hypertension (PH).

In fact, biological samples collected at the first PHA International PH Conference and Scientific Sessions Research Room led to the 1996 discovery of a gene for familial pulmonary arterial hypertension.

As PHA founders were planning that first conference, researchers looking for genetic ties to PH asked to draw blood and obtain family histories from attendees. They recognized that Conference, as the largest gathering of people with PH, had the potential to further ongoing research.

Thanks to the many patients and family members who participated, researchers found enough people with familial PH to work toward the PH gene (BMPR2) discovery.

Since then, Research Room has become one of the most popular features at Conference. It continues draw scientists and investigators interested in PH, and of course, patients and their families invested in earlier diagnosis, better treatment and ultimately, a cure for PH.

Recently, we shared updates from studies conducted at Research Room 2018. Investigators discussed six studies in our July 29 PHA Live webinar “PHA Research Room Findings.”

If you didn’t get a chance to join the webinar, I invite you to watch it online or read this PHA News story. The findings really show how your contributions to research studies can improve patient care and outcomes.

One study showed how PH study group participation affects quality of life. Another looked at why some patients weren’t referred to exercise rehab. Another study helped the researchers secure funding from the National Institutes of Health for a PH-specific tool to assess risk and guide patient care.

If you weren’t among the 200 people who participated in Research Room 2018, we hope you’ll get a chance to join us in 2022. We now have a theme for PHA 2022 in Atlanta: PHacing the Future Together.

Congratulations to Tina Barley of Hamilton, Alabama, who submitted the winning idea. Tina’s theme, chosen from more than 100 ideas, was inspired by her daughter Caitlin, who passed away at 15 from PH.

Tina connected with another PH mom though her support group not long after Caitlin’s passing, and they remain close to this day. Their story, like the Research Room study, shows the power of PH support groups.

If you’re new to the PH community, I encourage you to join one of our many support groups or connect through the PHA Support Line.

If you want to pay forward the support you’ve received, consider volunteering to answer support line calls or making an investment in the future of PH care and support by contributing to PHA.

With gratitude and respect,