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Recruiting NCT05382572

Pulmonary Fibrosis Foundation Community Registry

— Observational Pulmonary Fibrosis Interstitial Lung Disease Lung Fibrosis Idiopathic Pulmonary Fibrosis

For patients and families

In plain language

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An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.

What is being studied
This is an observational study: the protocol does not assign a study treatment.
Who it may be relevant to
Registry conditions: Pulmonary Fibrosis, Interstitial Lung Disease, Lung Fibrosis, Idiopathic Pulmonary Fibrosis. Basic parameters: from 18 years · All.
What needs checking
Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
Where it takes place
United States
Next step
Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →

Unsure about the terms? Read our patient guide →

Overview

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.

Detailed 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.

Primary outcome measures

  • Number of patients who have or had interstitial lung disease (ILD) enrolled in the PFF Community Registry [Time frame: 3 years]
  • Number of caregivers of patients who have or had ILD enrolled in the PFF Community Registry [Time frame: 3 years]
  • Number of family members of patients who have or had ILD enrolled in the PFF Community Registry [Time frame: 3 years]

Eligibility 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

Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.

Healthy volunteers: Yes

Study design

Observational model
Cohort

Study locations

United States · 1 center
  • Pulmonary Fibrosis Foundation — Chicago

Identifiers

NCT: NCT05382572 · HUM00202724

Primary sources (government registries)

View this study on ClinicalTrials.gov ↗