Status:
RECRUITING
Pulmonary Fibrosis Foundation Community Registry
Lead Sponsor:
Pulmonary Fibrosis Foundation
Collaborating Sponsors:
University of Michigan
Conditions:
Pulmonary Fibrosis
Interstitial Lung Disease
Eligibility:
All Genders
18+ years
Brief 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...
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 tra...
Eligibility Criteria
Inclusion
- In order to be eligible to participate in this study, an individual must meet all of the following criteria:
- Provision of signed and dated informed consent form online
- Male or female, aged 18 or older
- Affected by PF as a member of at least one of the following cohorts:
- 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
- A family member (defined as parent, full or half-sibling, or child) of an individual with PF or ILD.
- Has internet access and a valid email address.
Exclusion
- An individual who meets any of the following criteria will be excluded from participation in this study:
- 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.
- Sarcoid
- Lymphangioleiomyomatosis (LAM)
- Pulmonary alveolar proteinosis (PAP)
- Cystic fibrosis (CF)
- Amyloidosis
Key Trial Info
Start Date :
July 11 2022
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
July 1 2027
Estimated Enrollment :
10000 Patients enrolled
Trial Details
Trial ID
NCT05382572
Start Date
July 11 2022
End Date
July 1 2027
Last Update
April 11 2025
Active Locations (1)
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1
Pulmonary Fibrosis Foundation
Chicago, Illinois, United States, 60611