Registry for individuals affected by pulmonary fibrosis
Pulmonary Fibrosis Foundation Community Registry
This study invites people with pulmonary fibrosis, along with their caregivers and family members, to share their experiences through online surveys to help researchers understand the condition better and possibly reach out for future studies.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 10000 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Pulmonary Fibrosis Foundation Academic / other |
| Locations | 1 site (Chicago, Illinois) |
| Trial ID | NCT05382572 on ClinicalTrials.gov |
What this trial studies
The Pulmonary Fibrosis Foundation Community Registry is an observational, longitudinal cohort initiative that allows individuals affected by pulmonary fibrosis (PF) to self-enroll and share their experiences. Participants include patients with PF, caregivers, and family members, who contribute data through online surveys at regular intervals. This registry aims to compile a comprehensive dataset that can be utilized by researchers to better understand the impact of PF on patients and their families. Additionally, participants may opt to be contacted for future research opportunities.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with pulmonary fibrosis or interstitial lung disease, caregivers, and family members of affected individuals.
Not a fit: Patients residing outside of the US or those unable to provide informed consent may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could enhance understanding of pulmonary fibrosis and improve patient care and treatment options.
How similar studies have performed: Other observational registries have shown success in collecting valuable data for research, indicating that this approach is promising.
Eligibility criteria
Show full inclusion / exclusion 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
Where this trial is running
Chicago, Illinois
- Pulmonary Fibrosis Foundation — Chicago, Illinois, United States (Recruiting)
Study contacts
- Study coordinator: Jessica E Shore, PhD
- Email: registry@pulmonaryfibrosis.org
- Phone: 312-818-5731
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.