It’s 2K and counting for PF patient registry, foundation says

PFF's self-reported database gets its 2,000th participant

Mary Chapman avatar

by Mary Chapman |

Share this article:

Share article via email
A person in a baseball cap speaks into a megaphone.

The Pulmonary Fibrosis Foundation (PFF) said its two-year-old patient Community Registry achieved a “significant milestone” in its goal to drive more research and discoveries in pulmonary fibrosis (PF) and interstitial lung diseases (ILDs), reaching its 2,000th participant.

The registry opened in July 2022 to provide scientists with important PF and ILD data from patients and biological family members, including those who have died. It also collects data from caregivers and lung transplant recipients. The ultimate purpose of the registry, which has participants from all 50 states, is to allow those affected by PF to work together toward a cure.

“Reaching the 2,000-participant landmark is very exciting for researchers, and indicative of the passion of those in the entire PF community,” Kevin Flaherty, MD, PFF Registry steering committee chair, said in a foundation press release. “Thanks to all those who have joined the Community Registry, we are gathering essential data that will help us not only understand the impact of these diseases but will also help us develop better therapies.”

PF, a disease marked by scarring of the lungs, leading to shortness of breath, is part of a group of more than 200 lung disorders known collectively as ILDs. PF is one of the leading causes leading to lung transplants, which carry risks but can extend life and improve life quality.

The 2,000-participant milestone occurred during Registry Recruitment Week in April. The PFF continues to encourage eligible individuals to share their experiences with researchers. More than 250,000 U.S. residents are thought to live with PF or another ILD, and about 50,000 people are diagnosed annually. Those numbers are rising, according to the organization.

Recommended Reading
banner image for

How advocacy organizations support rare disease research

Self-reported registry is first to include family data

“What I would want researchers to know about my story is that I was suffering with the disease for several years before I was finally diagnosed in 2011,” said Alejandro Puebla, Community Registry participant and lung transplant recipient. “I want people who are diagnosed with PF to have access to better treatments so they can live long and prosperous lives.”

Along with the PFF Patient Registry, which features physician-reported clinical data about patients, the Community Registry is an arm of the PFF Registry, a nationwide research program. Combined, they serve as resources to promote research and assist in clinical trial recruitment.

The community registry is the first self-reported registry for all PF and ILD community members, and the first of its kind to include family member data. Diverse perspectives on PF’s impact are “crucial” to current and future PF research, according to the foundation.

Community Registry participation requires completion of two online surveys annually, which together take about two hours to complete. Questions will cover topics including the participant’s experience, demographics, diagnosis, education, employment, and environmental exposures.

“As a young researcher, I deeply appreciate the participation of patients and their families,” said John Kim, MD, from Columbia University. “With no limit on enrollment, every new participant in this Registry will provide deeper insights that can help answer the many urgent questions that still remain about PF and ILD.”