NCT05382572 Pulmonary Fibrosis Foundation Community Registry
| 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 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 10,000 participants in total. It began in 2022-07-11 with a primary completion date of 2027-07-01.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
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 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. 4. 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
Contact & Investigator
Kevin R Flaherty, MD
STUDY CHAIR
Pulmonary Fibrosis Foundation
Frequently Asked Questions
Who can join the NCT05382572 clinical trial?
This trial is open to participants of all sexes, aged 18 Years or older, studying Pulmonary Fibrosis. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT05382572 currently recruiting?
Yes, NCT05382572 is actively recruiting participants. Contact the research team at registry@pulmonaryfibrosis.org for enrollment information.
Where is the NCT05382572 trial being conducted?
This trial is being conducted at Chicago, United States.
Who is sponsoring the NCT05382572 clinical trial?
NCT05382572 is sponsored by Pulmonary Fibrosis Foundation. The principal investigator is Kevin R Flaherty, MD at Pulmonary Fibrosis Foundation. The trial plans to enroll 10,000 participants.