RESEARCH IN PULMONARY HYPERTENSION

"PHA's research program has yielded an explosion of understanding about PH that was not known before."
- John Newman, MD, Vanderbilt University Medical Center


Twenty years ago there were no pulmonary hypertension treatments available. Through focused research there are now twelve PH-specific treatments with more in development. But we know that your ultimate wish is for a cure, and that is why PHA will continue to support the work of researchers until the day when no one suffers from PH.

PHA’s Research Program

In just a little under a decade, PHA’s Research Program has committed more than $12.5 million for PH research by leveraging partnerships with the National Heart, Lung, and Blood Institute (NHLBI) and the American Thoracic Society (ATS). We have supported over 49 promising researchers through four independently reviewed, cutting-edge research programs.

Read more about PHA’s Research Program

Learn more

Current Treatments

PHA’s Scientific Leadership Council’s Education Committee has put together comprehensive factsheets on all the treatments available for pulmonary hypertension. Read more about current treatments

Research Corner in Pathlight

Every issue of PHA’s quarterly print newsletter Pathlight features a Research Corner with information about some of the latest research. Read more

 

Pulmonary Hypertension Research News
FDA Meeting Registration Deadline Just Two Weeks Away

On May 13, in White Oak, Md., the Food and Drug Administration will host an informal, “talk show” style meeting where PAH patients can share what it’s really like to live with pulmonary arterial hypertension. FDA will use this information when considering whether to approve PH drugs in the future.

Please help us make a better tomorrow for PAH patients by attending in person or listening in and submitting comments via webcast. Register by April 30.

  1. Register with FDA. Whether you are attending in person or by webcast, you must register on FDA’s website. All members of the PH community are welcome, but PAH patients and the parents of young patients will do the talking. 
  2. Claim your seat on the bus. For those who would prefer not to drive to the FDA campus, buses are available from pick up points in New York, Philadelphia and Maryland.

Don't miss out on this unique opportunity!

Questions? Contact Katie at 301-565-3004 x749.


Wednesday, April 16, 2014 6:00:00 PM

PROMIS Quality of Life Survey

Vivek Nagaraja, MD and Dinesh Khanna, MD, MSc at the University of Michigan Health System, are conducting a piece of research called PROMIS (Patient Reported Outcomes Measurement Information System) in rheumatology. The research involves an online survey catered to patients with various rheumatologic conditions. Interested patients are highly encouraged to take this survey as it provides important information about the burden of their rheumatologic condition on different aspects of life. This survey is completely voluntary and confidential.

Click here to take the survey: www.Bitly.com/UMpromis

View further instructions on taking the survey: www.PHAssociation.org/PROMIS_Survey_Instructions


Thursday, April 10, 2014 4:52:00 PM

Bayer Begins Riociguat Trial for Resistant PAH

healio - Bayer HealthCare announced enrollment of the first participant in the phase 3b RESPITE study. The open-label, multicenter, international pilot study will assess the soluble guanylate cyclase stimulator riociguat (Adempas) in patients with pulmonary arterial hypertension who are resistant to treatment with phosphodiesterase-5 (PDE5) inhibitors.



Read article


Monday, April 07, 2014 11:00:00 PM

What Do You Want from New PAH Drugs?

The Food and Drug Administration is making changes in how they approve drugs. For the first time ever, they are asking, “What do patients want from new drugs?”

Hundreds of disease communities have asked for a chance to answer that question. PAH is one of only sixteen diseases selected by the FDA for this discussion. Please help us make a better tomorrow for PAH patients by attending in person or listening  in and submitting comments via webcast on May 13.

Take these two steps to RSVP for this exciting opportunity:

  1. Register with the FDA. Whether you are attending in person or by webcast, you must register on FDA’s website. All members of the PH community are welcome, but PAH patients and parents of young patients will do the talking.
  2. Claim your seat on the bus. For those who would prefer not to drive to the FDA campus, buses are available from Maryland, New York and Philadelphia. Complete this form to claim your seat on the bus.

Friday, March 21, 2014 10:00:00 AM

Yale Study Offers Insight Into Function of Cells Linked to PH

Science Codex - Most of us draw roughly 25,000 breaths a day without any thought. But for patients with pulmonary hypertension, a life-threatening increase in blood pressure in the lungs, even the smallest task can leave them gasping for air. A new study by researchers at Yale School of Medicine offers insight into the function of cells linked to this incurable and often fatal illness.

Read article


Thursday, March 20, 2014 11:22:00 AM

HOW YOU CAN HELP

Woman having blood drawn

Participating in research & clinical trials helps gain information vital to progress toward a cure

Learn more about participating in research

ADVOCATE FOR RESEARCH FUNDING

Put your Members of Congress to work for you, their constituent. Ask them to support federal funding for PH research and education.

Advocate for PH research funding

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.