PFF Registry News


Pulmonary Fibrosis Foundation Announces New Sponsorship by United Therapeutics

United Therapeutics has joined the Pulmonary Fibrosis Foundation (PFF) as a sponsor of the PFF Registry, a research resource that tracks clinical data, blood samples, and patient-reported outcomes from individuals living with pulmonary fibrosis nationwide.

Newswise — The Pulmonary Fibrosis Foundation (PFF), the nation's leading pulmonary fibrosis (PF) education and advocacy organization, has announced United Therapeutics' sponsorship of the PFF Registry, a research resource that tracks clinical data, blood samples and patient-reported outcomes from individuals living with PF nationwide. 

United Therapeutics is a leading biotechnology company with a mission to develop treatments for rare diseases, including pulmonary hypertension (PH) and idiopathic pulmonary fibrosis (IPF). The sponsorship will help researchers working to address the unmet need in treating patients with PF and secondary PH, for which there are currently no FDA-approved therapies.

"We are eager for researchers to use the PFF Registry to help us better understand PH in PF, thereby allowing us to improve care for patients," said Kevin Flaherty, MD, Chair of the PFF Registry and Care Center Network (CCN) Steering Committee.

PF is a debilitating disease from many causes that results in progressive and irreversible scarring of the lungs. More than 50,000 new cases are diagnosed each year. Prolonged survival in PF patients with PH is worse than in PF patients without PH.

"We believe that our support of the PFF Registry will enable United Therapeutics and other researchers to answer important questions about PH associated with PF," said Andrew Nelsen, PharmD, Associate Vice President, Global Medical Affairs at United Therapeutics.

In 2021, the PFF Registry will reopen for enrollment and will add a direct-to-community arm to broaden participation beyond patients within the CCN. For the first time, patients from outside the CCN as well caregivers, family members and those who have received a lung transplant will be able to participate. The expanded Registry will collect data through an online interface, particularly important during COVID-19 when many medical studies are on hold.

United Therapeutics will join Genentech and Boehringer Ingelheim at the highest levels of sponsorship for the Registry. Launched in 2016, the PFF Registry reached its initial targeted enrollment of 2,000 patients in 2018. Data from the Registry have been used in almost 40 studies valued at more than $32 million.

About the Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation (PFF) mobilizes people and resources to provide access to high quality care and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. The PFF has a four-star rating from Charity Navigator and is a Better Business Bureau and National Health Council accredited charity. For more information, visit or call 844.TalkPFF (844.825.5733) or 312.587.9272 from outside the U.S

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