Online registry collecting patient experiences with pulmonary fibrosis
Collects information from people with lung scarring, including after transplant, over time.
Plain-language title generated from the registry record
Registry title: Pulmonary Fibrosis Foundation Community Registry
Key facts
- Where
- Chicago, United StatesSee the site
Where in United States
- Pulmonary Fibrosis FoundationChicago, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Pulmonary Fibrosis Foundation
- Trial code
- NCT05382572
- Record updated
- 17 September 2026
- Original description
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.Read full original descriptionShow less
Pulmonary Fibrosis Foundation Community Registry
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.
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: 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; 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.