Pulmonary Fibrosis Foundation Community Registry

NCT05382572 | Recruiting

• 1 other identifier: HUM00202724
• Study Type: observational
• Target: 10,000
• Locations: 1 country
• Sites: 1

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.

Conditions

Pulmonary Fibrosis; Interstitial Lung Disease; Lung Fibrosis; Idiopathic Pulmonary Fibrosis

Outcome Measures

Primary Outcomes (3)

• Number of patients who have or had interstitial lung disease (ILD) enrolled in the PFF Community Registry

  3 years

• Number of caregivers of patients who have or had ILD enrolled in the PFF Community Registry

  3 years

• Number of family members of patients who have or had ILD enrolled in the PFF Community Registry

  3 years

Study Arms (3)

Patients

An individual diagnosed with PF or ILD, including those who are post lung transplant.

Family Members

A family member (defined as biological parent, full or half-sibling, or biological child) of an individual with PF or ILD.

Caregivers

An individual who has cared (currently or in the past) for an individual with PF or ILD.

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

The Community Registry will enroll three different cohort groups: 1. Patients with PF or ILD, including those who are post lung transplant 2. Caregivers of patients with PF or ILD 3. Family members of patients with PF or ILD

You may qualify if:

• 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.

You may not qualify if:

• 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.
• 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

Sponsors & Collaborators

• Pulmonary Fibrosis Foundation: lead
• University of Michigan: collaborator

Study Sites (1)

Pulmonary Fibrosis Foundation

Chicago, Illinois, 60611, United States

RECRUITING

Related Links

• Pulmonary Fibrosis Foundation Registry Information

MeSH Terms

Conditions

Pulmonary Fibrosis; Lung Diseases, Interstitial; Idiopathic Pulmonary Fibrosis

Condition Hierarchy (Ancestors)

Lung Diseases; Respiratory Tract Diseases; Fibrosis; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Officials

• Kevin R Flaherty, MD

  Pulmonary Fibrosis Foundation

  STUDY CHAIR

Central Study Contacts

Jessica E Shore, PhD

CONTACT

312-818-5731; registry@pulmonaryfibrosis.org

Joseph Colbert, BA

CONTACT

734-615-9813; pffr-dcc-pm@umich.edu

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 5 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: May 16, 2022
• First Posted: May 19, 2022
• Study Start: July 11, 2022
• Primary Completion (Estimated): July 1, 2027
• Study Completion (Estimated): July 1, 2027
• Last Updated: April 11, 2025

Record last verified: 2025-04

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)