PFF’s Community Registry Drives Research Towards a Cure

The Pulmonary Fibrosis Foundation (PFF) community registry achieved a significant milestone this month, surpassing the 2,500 mark with an enrollment tally of 2,502.The registry serves as a comprehensive collection of surveys from individuals affected by pulmonary fibrosis (PF) or interstitial lung disease (ILD).

Launched in July of 2022, the PFF registry aims to address the knowledge gaps surrounding PF and ILD by gathering data directly from patients, lung transplant recipients, caregivers and biological family members, including those who have lost loved ones to these conditions.h

Jessica Shore, Ph.D.

“It’s a database that provides a wealth of data on those patients living with PF and ILD, and what’s really unique and first of its kind, is that it also incorporates family members and caregivers, so we can understand the full impact, not just on the individual patient but the community around the patient,” Jessica Shore, Ph.D., senior vice president for clinical affairs and quality for the PFF, told MHE.

Shore explained the registry collects survey responses every six months that are used for scientific analysis, with the goal of understanding how PF and ILD progress, how they respond to various treatments, and how they affect individuals differently.

“We ask a number of questions based on who the cohort is, and it’s able for us to get not just their info from their medical record but helps us understand how they are feeling and how their life has been impacted by PF,” Shore said. “And they can do it all from home; they don’t have to go to a clinic or medical center to share their data.”

The larger the pool of participants, the better the chance for answers that help with tangible improvements in research, advocacy, education and clinical practice.

“Nearly 60% of patients say they are experiencing shortness of breath as their worth complaint at time of diagnosis, and almost one-third are experiencing cough, so we are able to deep-dive into this and look at specific research projects and collaborate with researchers in some of this,” Shore said.

Currently, approximately 66% are patients, 9% are family members, and 8% are caregivers only, with the remaining percentage being overlap between the three.

“There is no question that the registry allows us to impact the lives of our patients and future patients in a positive way because it allows us to ask and perhaps answer essential questions in PF,” said Ayodeji Adgunsoye, M.D., an assistant professor at the University of Chicago Medicine.

The PFF Registry serves as a resource to stimulate research and assist in clinical trial recruitment. Deidentified clinical data, biosamples, and HRCT scans from the PFF Patient Registry are available for use by clinical and translational investigators in academia and industry.

Proposals are assessed based on their scientific validity, feasibility and various other criteria. The review process typically takes six to eight weeks. Once a proposal is approved, the PFF Registry team will inform the author, after which the data coordinating center will reach out to finalize agreements, establish the statistical analysis plan and distribute data and specimens for the study.