NCT05382572Recruiting
Pulmonary Fibrosis Foundation Community Registry
Source: ClinicalTrials.gov · Last updated 17 Sept 2026
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 10000 (estimated)
- First submitted
- 16 May 2022
- Start date
- 11 Jul 2022
- Primary completion date
- 1 Jul 2027
- Lead sponsor
- Pulmonary Fibrosis Foundation
- Diseases
- Idiopathic pulmonary fibrosis
- NCT number
- NCT05382572
What you commit to
- Study type: Observational
- Planned participants: 10000
- From 11 Jul 2022 to the primary completion date, 1 Jul 2027
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- 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
Other
- 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.
Who the study is looking for
- 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.
Age in the registry: 18 years to - · Sex: All · Accepts healthy volunteers
Sites (1)
Sites in registry order. Save your city in your profile to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Pulmonary Fibrosis Foundation Coordinator of this site? Confirm its status | Chicago | United States | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.