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.
Provision of signed and dated informed consent form online
Male or female, aged 18 or older
An individual diagnosed with PF or ILD, including those who are post lung transplant, or
An individual who has cared (currently or in the past) for an individual with PF or ILD, and / or
Primary residence or place of care is outside of the US.
Inability or unwillingness of a participant to provide informed consent or comply with study protocol.
Any condition or circumstance not listed above, which, in the opinion of the investigator, may pose additional risks from participation in the study, may interfere with the participant's ability to comply with study requirements or that may impact the quality or interpretation of the data obtained from the study.
Patients who were diagnosed with any of the below lung diseases. Similarly caregivers and family members associated with these diseases would be excluded.
The Community Registry will enroll three different cohort groups: 1. Patients with PF or ILD, including those who are post lung transplant 2. Caregivers of patients with PF or ILD 3. Family members of patients with PF or ILD
Cohort
Prospective
Not listed
Number of patients who have or had interstitial lung disease (ILD) enrolled in the PFF Community Registry
Number of caregivers of patients who have or had ILD enrolled in the PFF Community Registry
Number of family members of patients who have or had ILD enrolled in the PFF Community Registry
Click on the lead sponsor to view all of their trials.
Pulmonary Fibrosis Foundation
Lead sponsor
University of Michigan
Collaborator
