NCT05382572

Pulmonary Fibrosis Foundation Community Registry

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 10,000 (estimated)
• Sponsor: Pulmonary Fibrosis Foundation · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Accepted

Summary

Pulmonary fibrosis (PF) results from a diverse group of health conditions and affects the lives of patients (including those who are post lung transplant), caregivers and family members. The Pulmonary Fibrosis Foundation Community Registry will offer an online portal where participants can self-enroll and directly contribute information about their experience with PF to be compiled into a longitudinal data set for use by researchers.

Detailed description

The PFF Community Registry is an observational, longitudinal cohort study. The Community Registry will enroll three different cohort groups: 1. Patients with PF, including those who are post lung transplant 2. Caregivers of patients with PF 3. Family members of patients with PF This is an online registry open to individuals affected by PF in the US. It is not associated with a physical location or institution. Individuals may self-enroll online and contribute data to the Community Registry by answering a series of surveys at regular intervals. Participants may also elect to be contacted about future research projects through the PFF Community Registry portal. However, this is not required to participate in the Community Registry itself.

Conditions

• Pulmonary Fibrosis
• Interstitial Lung Disease
• Lung Fibrosis
• Idiopathic Pulmonary Fibrosis

Timeline

• Start date: 2022-07-11
• Primary completion: 2027-07-01
• Completion: 2027-07-01
• First posted: 2022-05-19
• Last updated: 2025-04-11

Locations

1 site across 1 country: United States