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 $14 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
Quebec Breathes New Hope into Lives of Those Affected by Pulmonary Arterial Hypertension

(CNW) - The Pulmonary Hypertension Association of Canada (PHA Canada) was pleased to learn that a new treatment option for pulmonary arterial hypertension (PAH) is now being publicly funded in the province of Quebec. On October 1, the Institut national d'excellence en santé et services sociaux (INESSS) recommended that the drug Opsumit (macitentan) be added to the list of drugs covered by the prescription drug insurance plan administered by the Régie de l'assurance maladie du Québec (RAMQ). Read the full press release


Tuesday, October 21, 2014 8:49:00 AM

PHA Accredits First Six PH Care Centers; Application Process Now Open

We are excited to announce that we have accredited our first six Pulmonary Hypertension Care Centers (PHCC). This initiative aims at improving overall quality of care and ultimately improving outcomes of patients with pulmonary hypertension.

Two types of centers will be accredited: Centers of Comprehensive Care (CCC) - the first six are listed below - and Regional Clinical Programs (RCP). For interested centers, the PHCC Application is now open and available for download. Many PH programs have already submitted their application, and you can track their progress on the Applicant Center page.

Quality Care from Experts in the Field

“The PHCC will give PH patients security in knowing they are receiving quality care from the experts in the field,” said Dr. Murali Chakinala, from the Washington University School of Medicine and PHCC Committee Chair. “Patients can feel confident that the PHCCs have been vetted by a rigorous process that includes a detailed application and a comprehensive site visit with ultimate adjudication by a Committee of more than 20 health professionals with vast experience in caring for PH patients.”

PHA's Scientific Leadership Council and the PHCC Oversight Committee set high parameters for PHCC accreditation. PHCC accreditation signifies that a PH program has demonstrated a dedication to making proper diagnosis and capacity to appropriately and comprehensively manage PH patients through a set of criteria established by the PHA Scientific Leadership Council – 28 global leaders in the field of pulmonary hypertension. These criteria have also been developed with input from many PH stakeholders including physicians, allied health care professionals, patients and PHA leadership and are considered essential to delivering high-quality care for these complex patients.

Patient Registry for Determining Effective Care


Accredited PH Care Centers will also contribute to a PH patient registry that will track diagnostic and treatment patterns at a national level, ultimately demonstrating quality improvement for the care of PH patients.

“The PH patient registry will provide important data on the care and outcomes of patients with pulmonary hypertension across the country,” said Dr. Steven Kawut of the Perelman School of Medicine at the University of Pennsylvania. “We can then begin to understand best practices in the treatment of PH and continue to improve the quality of life and survival of individuals with this disease.”

Linking Centers through a national network will increase collaboration in the PH community, through clinical, quality improvement and investigative partnership.

First Six Accredited Centers

  1. Inova Advanced Lung Disease and Transplant Program, Inova Fairfax Hospital, Fairfax, Va.
  2. Penn Pulmonary Hypertension / Pulmonary Vascular Disease Program, University of Pennsylvania Health System and Perelman School of Medicine, Philadelphia, Pa.
  3. Kentuckiana Pulmonary Associates, Louisville, Ky.
  4. UC Health Pulmonary Hypertension Program, University of Cincinnati, Cincinnati, Ohio.
  5. Cottage Pulmonary Hypertension Center, Cottage Health System, Santa Barbara, Calif.
  6.  Stanford Pulmonary Hypertension Program, Stanford University, Stanford, Calif.

For more information on PHCC visit www.PHAssociation.org/PHCareCenters or email PHCC@PHAssociation.org.

 


Wednesday, October 01, 2014 1:44:00 PM

Screen Scleroderma Patients Annually for Pulmonary Hypertension

Scleroderma patients should be screened every year for pulmonary hypertension even if they are recently diagnosed and have no respiratory symptoms. Noninvasive tests can catch pulmonary problems early, and treatments are available to slow the progression of scleroderma. Read more and watch the video


Friday, September 19, 2014 1:42:00 PM

Researchers Find New Targets for Treating Pulmonary Hypertension

Jiwang Chen, research assistant professor of critical care medicine, sleep and allergy in the UIC College of Medicine, and his colleagues investigated the molecular mechanisms behind the abnormal proliferation of smooth muscle cells in the pulmonary artery and discovered two ways that the proliferation could be suppressed.

Dr. Chen as well as collaborating author Guofei Zhou have received research grants from PHA in the past. Dr. Roberto Machado, one of the senior authors, is a member of PHA's Scientific Leadership Council and is the PHA Medical Education On-Demand National Chair.

Read article


Wednesday, September 17, 2014 1:40:00 PM

CHEST Endorses Accreditation of PH Care Centers by PHA

 

 
The Pulmonary Hypertension Association and its Scientific Leadership Council have spearheaded a quality improvement initiative to accredit Pulmonary Hypertension Care Centers (PHCC) across the country. These centers are committed to providing high-quality care based on broadly accepted standards of care and consensus guidelines. These centers aspire to improve outcomes of patients with pulmonary hypertension.

The American College of Chest Physicians (CHEST) has endorsed this accreditation process and sees it as another indicator of high quality care are for pulmonary hypertension patients.

“The PHCC are a testament to the growth in research and awareness of pulmonary hypertension,” said Rino Aldrighetti, PHA President and CEO. “We have grown from one treatment in 1996 to 12 in 2014, with more on the horizon. These centers prove that a small rare disease organization can save lives and move mountains in the race toward a cure.”

Currently there are six pilot centers that have gone through the accreditation process. The online application process will open in mid-September 2014. For more information on PH Care Centers, go to www.PHCareCenters.org.

 


Tuesday, September 09, 2014 1:38:00 PM


Patients & Families

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

Learn more about participating in research

MEDICAL PROFESSIONALS

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Research grant opportunities are available from PHA’s Research Program in the field of PH.

Learn more and apply today


Donate to 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

“Our goal is to find a cure, but we need dollars in order to do it.”
Serpil Erzurum, MD, Research Committee Chair of PHA’s SLC

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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.