Pulmonary Fibrosis Foundation Community Registry

Last updated: March 5, 2025
Sponsor: Pulmonary Fibrosis Foundation
Overall Status: Active - Recruiting

Phase

N/A

Condition

Idiopathic Pulmonary Fibrosis

Cystic Fibrosis

Pulmonary Fibrosis

Treatment

N/A

Clinical Study ID

NCT05382572
HUM00202724
  • Ages > 18
  • All Genders
  • Accepts Healthy Volunteers

Study 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

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:

  4. An individual diagnosed with PF or ILD, including those who are post lungtransplant, or

  5. An individual who has cared (currently or in the past) for an individual withPF or ILD, and / or

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

  7. Has internet access and a valid email address.

Exclusion

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 complywith study protocol.

  3. Any condition or circumstance not listed above, which, in the opinion of theinvestigator, may pose additional risks from participation in the study, mayinterfere with the participant's ability to comply with study requirements or thatmay impact the quality or interpretation of the data obtained from the study.

  4. Patients who were diagnosed with any of the below lung diseases. Similarlycaregivers and family members associated with these diseases would be excluded.

  • Sarcoid

  • Lymphangioleiomyomatosis (LAM)

  • Pulmonary alveolar proteinosis (PAP)

  • Cystic fibrosis (CF)

  • Amyloidosis

Study Design

Total Participants: 10000
Study Start date:
July 11, 2022
Estimated Completion Date:
July 01, 2027

Study Description

The PFF Community Registry is an observational, longitudinal cohort study. The Community Registry will enroll three different cohort groups:

  1. Patients with PF, including those who are post lung transplant

  2. Caregivers of patients with PF

  3. Family members of patients with PF

This is an online registry open to individuals affected by PF in the US. It is not associated with a physical location or institution. Individuals may self-enroll online and contribute data to the Community Registry by answering a series of surveys at regular intervals.

Participants may also elect to be contacted about future research projects through the PFF Community Registry portal. However, this is not required to participate in the Community Registry itself.

Connect with a study center

  • Pulmonary Fibrosis Foundation

    Chicago, Illinois 60611
    United States

    Active - Recruiting

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