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Recruiting NCT05382572

NCT05382572 Pulmonary Fibrosis Foundation Community Registry

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Clinical Trial Summary
NCT ID NCT05382572
Status Recruiting
Phase
Sponsor Pulmonary Fibrosis Foundation
Condition Pulmonary Fibrosis
Study Type OBSERVATIONAL
Enrollment 10,000 participants
Start Date 2022-07-11
Primary Completion 2027-07-01

Trial Parameters

Condition Pulmonary Fibrosis
Sponsor Pulmonary Fibrosis Foundation
Study Type OBSERVATIONAL
Phase N/A
Enrollment 10,000
Sex ALL
Min Age 18 Years
Max Age N/A
Start Date 2022-07-11
Completion 2027-07-01

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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 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.

Eligibility Criteria

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 or ILD. 4. Has internet access and a valid email address. Exclusion Criteria: An individual who meets any of the following criteria will be excluded from participation in this study: 1. Primary residence or place of care is outside of the US. 2. Inability or unwillingness of a participant to provide informed consent or comply with study protocol. 3. Any condition or circumstance not listed above, which, in th

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