PF Foundation Patient Registry Opening to Those With Secondary PH

Teresa Carvalho, MS avatar

by Teresa Carvalho, MS |

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PFF Registry expanding

United Therapeutics is now among the leading sponsors of the Pulmonary Fibrosis Foundation (PFF) Registry, a research data resource for pulmonary fibrosis (PF) that is expanding to include pulmonary hypertension (PH) associated with PF, the foundation announced.

Pulmonary hypertension that develops during the course of PF (characterized by scarring of lung tissue) negatively affects the well-being and survival of PF patients. People with PH associated with PF also have no therapies approved by the U.S. Food and Drug Administration.

“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,” Andrew Nelsen, associate vice president of Global Medical Affairs at United Therapeutics, said in a press release.

The registry is collecting clinical and other data on PF patients across the U.S. Disease symptoms, blood samples, medical test results, and treatment and patient-reported outcomes are among the information available to researchers. Nearly 40 studies into PF to date have been supported with registry data, the foundation stated.

It opened in 2016 to patients within the foundation’s Care Center Network (CCN), a group of medical centers with recognized expertise in PF diagnosis, treatment, and patient support. The registry reached its initial targeted enrollment of 2,000 PF patients two years later, in 2018.

Now, the PFF Registry is reopening to include a broader patient population, expanding both the amount and nature of data gathered. Those eligible for joining the reopened registry can be patients outside the CCN, their caregivers and family members, and lung transplant recipients.

“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 registry and the CCN Steering Committee.

Patient data and other information will be collected through an online interface, the PFF reported.

In addition to United Therapeutics, Genentech and Boehringer Ingelheim are also top sponsors of the PFF Registry.

The foundation reports that its decision to open a large, nationwide patient registry and biorepository was based on unmet needs as identified by PF clinicians, scientific leaders, and the patient community.

A Conversation With Rare Disease Advocates