Pulmonary Fibrosis Foundation Community Registry
Pulmonary Fibrosis Foundation
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.
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 abo…
Eligibility
- Age range
- 18+ years
- Sex
- All
- Healthy volunteers
- Yes
Inclusion Criteria: In order to be eligible to participate in this study, an individual must meet all of the following criteria: 1. Provision of signed and dated informed consent form online 2. Male or female, aged 18 or older 3. Affected by PF as a member of at least one of the following cohorts: 1. An individual diagnosed with PF or ILD, including those who are post lung transplant, or 2. An individual who has cared (currently or in the past) for an individual with PF or ILD, and / or 3. A family member (defined as parent, full or half-sibling, or child) of an individual with PF…
Location
- Pulmonary Fibrosis FoundationChicago, Illinois