Q&A: 1-year anniversary of registry to advance pulmonary fibrosis research

Key takeaways:

• After 1 year, more than 1,600 participants are a part of the Pulmonary Fibrosis Foundation’s Community Registry.
• This resource can be used to better understand several aspects of pulmonary fibrosis.

Given the rarity of pulmonary fibrosis, pulmonologists are constantly seeking to know more about the disease and advance research on treatment options.

Two valuable resources for this research come from the Pulmonary Fibrosis Foundation (PFF) through its Patient Registry and Community Registry, the latter of which just celebrated its 1-year anniversary.

Notably, the Community Registry is not only open to patients with pulmonary fibrosis (PF) or interstitial lung disease, but also to caregivers, biological family members of someone with PF or ILD, and individuals who underwent a lung transplant.

To learn more about the Community Registry, how it invites a diverse group of patients to participate and studies that have used the PFF’s Registries, Healio spoke with Joseph Lasky, MD, chief medical officer of the PFF.

Healio: What is the difference between the PFF Community Registry and the PFF Patient Registry and who can participate? How do the data collected in each registry complement each other?

Lasky: The Patient Registry was established in 2016 and collected clinical information, including patient-reported outcomes, pulmonary function data and high-resolution CT imaging from more than 2,000 patients who obtained care at 42 PFF Care Centers across the country. The Community Registry was launched in 2022 and relies on ongoing data provided directly by participants in 6-month intervals via online surveys. The Community Registry is open to patients living with PF and has added lung transplant recipients who have been diagnosed with PF, caregivers and biological family members of those living with PF.

Both data sets are valuable to researchers and the ILD community. The Community Registry includes holistic information to provide lifestyle data on education and employment, environmental exposures, quality of life and participation in support groups.

Healio: Why is it important to collect patient-reported data in this community?

Lasky: Collecting patient-reported data allows us to expand the scope and depth of information available to researchers by providing input from a large and unlimited diverse population of individuals affected by PF. PF and ILD are complicated diseases that vary in severity and symptoms, and the more first-hand information we can gather, the more granular information will be available for researchers to address important concerns for the PF community. By expanding the survey to caregivers and biological family members, we will capture more of the full impact of the diseases.

Healio: What steps is the PFF taking to ensure that the Community Registry includes a diverse population of patients?

Lasky: Since the Community Registry relies on self-reported data, completing the survey can be done at the individual's own pace and in the comfort of their home, making it significantly more accessible for those of all backgrounds, races, genders and ages to participate. Additionally, because the Community Registry includes information not only from patients living with PF but also from those who have had a lung transplant and patients’ family members or caregivers, the data reflect a significantly larger number of people and scope of experiences than ever before. The PFF is deploying a marketing strategy aimed at reaching a large and diverse audience.

Healio: How has the Community Registry impacted the care pulmonologist provide to their patients with PF and ILD?

Lasky: We currently have more than 1,600 participants in the Community Registry, which means it is now a valuable resource for researchers. Our plan is to expand in terms of both enrolling new participants and continuing to collect serial information over time from current participants. We anticipate the data will foster research to answer the numerous questions about PF and ILD, all with the goal of improving the lives of patients living with the diseases.

Healio: Are there notable studies that have used/are using this registry?

Lasky: Information from the PFF Patient Registry has already been used for 40 studies representing more than $32 million in disease research. Such studies include characteristics of patients selected for transplants; outcome differences based on sex or smoking status; characteristics associated with people using oxygen; and more. The PFF Registry has been instrumental in supporting an NIH clinical trial focused on precision medicine, which seeks to understand the effectiveness of medications based on genetic information. Moreover, the PFF Registry is being employed to assess serum and imaging biomarkers for the purpose of predicting disease progression. This research would not have been possible without data from patients in the PFF Registry. Now that we have a mass of participation in the Community Registry, we are excited to give researchers access to these data as well.

Healio: In a year’s time, how do you hope the registry has grown? Does the PFF have any outreach initiatives planned to expand the amount of data in the registry?

Lasky: We have more than 1,600 participants in the Community Registry, but we are just getting started! We are continuing outreach to recruit as many participants as possible to gather unparalleled insights into the experience of living with PF and ILD. Importantly, we also can contact patients in the Registry with new questions that arise, and to keep pace with patient expectations with care delivery. Furthermore, we are exploring using the Registry to notify patients of clinical trials near their homes, to accelerate discovering new and improved medications for PF.

The PFF Community Registry is fostering a network of patients, lung transplant recipients, caregivers and family members all with the same goal — finding answers to better diagnose, treat and potentially cure PF and ILD. Interested participants can visit pffregistry.org to enroll. Additionally, the PFF Community Registry is accepting research proposals. For questions about submitting an ancillary study proposal, email registry@pulmonaryfibrosis.org.

Reference:

• PFF community registry crosses 1-year mark with over 1,600 participants. https://www.pulmonaryfibrosis.org/about-us/news-and-media/news/article/2023/07/26/pff-community-registry-crosses-one-year-mark-with-over-1-600-participants. Published July 26, 2023. Accessed July 27, 2023.