Foundation seeks to boost patient, caregiver numbers in PF registry

Enrollment drive on this April with goal of 500 new members

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by Andrea Lobo |

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By the end of this month, the Pulmonary Fibrosis Foundation (PFF) is hoping to bump up patient and caregiver enrollment — by at least 500 people — in its pulmonary fibrosis (PF) community registry.

April is PFF Community Registry Recruitment Month, and the foundation is trying to boost its enrollment of U.S. residents, ages 18 or older, with PF or interstitial lung disease (ILD). The registry also is seeking to recruit caregivers and family members.

“There are no limits on how large the community registry can grow,” Kevin Flaherty, MD, chair of the PFF Registry steering committee, said in a press release.

“We need a wide range of voices from all different diagnoses, regions, races, ethnicities and ages to provide a clear picture of this disease for researchers and increase our chances of finding answers about PF and ILD,” Flaherty said.

The registry relies on self-reported information provided by patients and lung transplant recipients diagnosed with PF or ILD. During the month, to increase involvement, the foundation will lead a number of activities, including an educational webinar and a journal club discussion for healthcare providers who are part of the PFF Care Center Network. Community members also are encouraged to make use of social media.

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“The PFF Community Registry is a way for anyone affected by PF to be a part of the solution so that we can help those living with the disease, and hopefully, find a cure in the future,” Flaherty said.

PF is a progressive disease characterized by scarring, or fibrosis, in the lungs. It is part of a large group of more than 200 inflammatory lung diseases commonly called ILDs. Estimates indicate that more than 250,000 Americans are living with PF and ILDs, with about 50,000 new cases being diagnosed every year.

“While we have made many strides in research over the past two decades, there is still so much to learn about PF,” Flaherty said.

The PFF Community Registry was launched in July 2022, and has since enrolled more than 1,200 participants. After enrollment, the PFF asks members to complete online surveys twice a year — about every six months.

Participants are asked demographic information, such as education and employment, as background. Those with PF or an ILD are encouraged to share their diagnosis and treatment, and also answer questions about their exposure to certain environmental factors.

“One of the first things I considered after the day I was diagnosed was, how do I help? What can I do? The ultimate solution is a more effective therapy and a cure for pulmonary fibrosis,” said Sam Kirton, a PF lung transplant recipient and registry participant, adding, “That’s what the PFF Community Registry has the potential to enable.”

That’s also what motivated Valeria Harper, another PF patient who joined the registry.

“There are so many questions surrounding pulmonary fibrosis. And I want to be a part of the answer,” Hatcher said.

We encourage anyone affected by PF to help us grow the community registry by joining and spreading the word to others.

The goal of this PFF Community Registry Recruitment Month is to mobilize every patient or family member willing to share information and recruit new participants.

A webinar on April 26 will provide information on registry participation and share recent research on the disease. Additionally, those already enrolled are asked to complete their follow-up surveys.

“We encourage anyone affected by PF to help us grow the community registry by joining and spreading the word to others,” Flaherty said. Registrants are required to have internet access.

The PFF Community Registry is part of the PFF Registry, a nationwide research study aiming to find new strategies to prevent, diagnose, and treat PF. The PFF Registry program also includes the PFF Patient Registry, which obtained medical data from more than 2,000 PF patients gathered from 2016 to 2022 across several PFF care centers.

The PFF Registry is supported by multiple pharmaceutical companies, including Genentech, United Therapeutics, and Boehringer Ingelheim.