Pulmonary Fibrosis Foundation Community Registry

Description

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

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Study Overview

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Study Details

Study 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.

Pulmonary Fibrosis Foundation Community Registry

Pulmonary Fibrosis Foundation Community Registry

Condition
Pulmonary Fibrosis
Intervention / Treatment

-

Contacts and Locations

Chicago

Pulmonary Fibrosis Foundation, Chicago, Illinois, United States, 60611

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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.
  • 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

Ages Eligible for Study

18 Years to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

Pulmonary Fibrosis Foundation,

Kevin R Flaherty, MD, STUDY_CHAIR, Pulmonary Fibrosis Foundation

Study Record Dates

2025-07-01