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Pulmonary Fibrosis Foundation Community Registry

Pulmonary Fibrosis Foundation · with University of Michigan · NCT05382572

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Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Ages 18+ · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
10000
US sites recruiting
1
Study start
July 11, 2022
Record last updated
September 17, 2026

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

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; Progressive Pulmonary Fibrosis

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

Inclusion Criteria

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 Criteria

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

Recruiting US locations

  • Pulmonary Fibrosis Foundation

    Chicago, IL 60611

    Site contact: Kevin Flaherty, MD · 844-825-5733 · registry@pulmonaryfibrosis.org

Study contacts (from the official record)

  • Jessica E Shore, PhD · 312-818-5731 · registry@pulmonaryfibrosis.org
  • Joseph Colbert, BA · 734-615-9813 · pffr-dcc-pm@umich.edu
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Pulmonary Fibrosis Foundation Community Registry (NCT05382572) | Bored Studies