United Therapeutics Sponsors PFF Registry

Marisa Wexler MS avatar

by Marisa Wexler MS |

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PFF Registry

The Pulmonary Fibrosis Foundation (PFF) announced that United Therapeutics will sponsor the PFF Registry.

The Registry is a research resource that tracks clinical data, samples, and patient-reported outcomes from people living with pulmonary fibrosis in the U.S.

According to the PFF, United Therapeutics’ sponsorship of the Registry will aid researchers who are working to develop better treatments for people with pulmonary fibrosis and secondary pulmonary hypertension (PH, when the blood pressure in the lungs is abnormally high).

“We are eager for researchers to use the PFF Registry to help us better understand PH in PF [pulmonary fibrosis], thereby allowing us to improve care for patients,” Kevin Flaherty, MD, chair of the PFF Registry, said in a press release.

Flaherty also is chair of the steering committee for PFF’s Care Center Network (CCN), a consortium of medical centers dedicated to improving the lives of people with PF.

There currently are no approved therapies in the U.S. for patients with PH associated with PF. Furthermore, studies indicate that the survival rate of people with both conditions is worse than in people with PF 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, associate vice president of global medical affairs at United Therapeutics.

The PFF Registry will reopen for enrollment this year. In an effort to broaden participation beyond patients within the CCN, a direct-to-community arm will be created, meaning that patients from outside the CCN, together with caregivers, family members and those who have received a lung transplant, will for the first time be able to participate in the Registry.

The expanded Registry will collect data using an online interface. According to the PFF, this is particularly important during the COVID-19 pandemic, which has caused many medical studies to be placed on hold.

United Therapeutics joins two other pharmaceutical companies — Genentech and Boehringer Ingelheim — as top sponsors for the Registry.

The PFF Registry was launched in 2016 and in 2018 it completed its initial targeted enrollment of 2,000 patients. To date, data from the Registry have been used in nearly 40 studies.