Registry for individuals affected by pulmonary fibrosis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• Pulmonary Fibrosis Foundation
  Chicago, Illinois, United States Recruiting

Study contacts

• Principal investigator: Tejaswini Kulkarni, MD — Pulmonary Fibrosis Foundation
• Study coordinator: Jessica E Shore, PhD
• Email: registry@pulmonaryfibrosis.org
• Phone: 312-818-5731

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• Biobank for interstitial lung diseases

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• Inspiratory Flow Rate Capability in Pulmonary Fibrosis Patients

  This observational study tests how fast patients with IPF or PPF can inhale through dry powder inhalers with different resistances.

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• Treprostinil Palmitil Inhalation Powder for Progressive Pulmonary Fibrosis

  A 52-week study will test whether once-daily Treprostinil Palmitil Inhalation Powder helps lung function in adults with progressive pulmonary fibrosis compared to placebo.

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• AccuPulmo CT Portal for Detecting Pulmonary Fibrosis on Chest CT

  This study tests how well the AccuPulmo CT Portal can identify pulmonary fibrosis on existing chest CT scans from adults at Taichung Veterans General Hospital.

  Recruiting Taichung Veterans General Hospital · Taichung · NCT07761377

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.