Participant and Public Involvement and Engagement to Inform a Familial Pulmonary Fibrosis Research Cohort

Summary

This study is recruiting first-degree relatives (biological parents, children, and siblings) of people with pulmonary fibrosis (PF) to help design a future research program that will screen family members for PF.

We know that first degree family members of people affected by PF are at 8-9x higher risk of developing it than the general population. For this reason, we want to develop a research program to screen family members. Your involvement will be essential to how this research develops.

Researchers would like to hear your perspectives on what matters to you as a relative of someone affected by pulmonary fibrosis, and as someone potentially at-risk of developing it one day. Your insights will help us design a future research program that will screen at-risk individuals for this type of lung disease, to help us understand why some people develop PF and others don’t.

Qualifying participants are invited to complete a 10–15-minute online survey (via the link below), which will ask about:

• Any concerns about developing pulmonary fibrosis
• What information you would want from being screened for pulmonary fibrosis
• What forms of screening, testing, and long-term monitoring you may be willing to undergo (e.g. blood test, CT scan, pulmonary function test)
• How you would prefer to receive screening results
• Barriers and challenges you face that may prevent you from participating in a pulmonary fibrosis screening program

At the end of the survey, you may choose to share more by taking part in a one-time Zoom interview (30-45 minutes). The interview will be recorded for analysis purposes. If you would like to participate in an interview but not the survey, you may contact the study team directly through the contact details on this page.

Please note that participation in these surveys/interviews does not guarantee eligibility for participation in a future pulmonary fibrosis screening program.