RECRUITING

Pulmonary Fibrosis Foundation Community Registry

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Conditions

Pulmonary FibrosisInterstitial Lung DiseaseLung FibrosisIdiopathic Pulmonary Fibrosis

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

Pulmonary Fibrosis Foundation Community Registry

Quick Facts

Study Start:2022-07-11
Study Completion:2025-07-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT05382572

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.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. Provision of signed and dated informed consent form online
  2. 2. Male or female, aged 18 or older
  3. 3. Affected by PF as a member of at least one of the following cohorts:
  4. 1. An individual diagnosed with PF or ILD, including those who are post lung transplant, or
  5. 2. An individual who has cared (currently or in the past) for an individual with PF or ILD, and / or
  6. 3. A family member (defined as parent, full or half-sibling, or child) of an individual with PF or ILD.
  7. 4. Has internet access and a valid email address.
  1. 1. Primary residence or place of care is outside of the US.
  2. 2. Inability or unwillingness of a participant to provide informed consent or comply with study protocol.
  3. 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. 4. Patients who were diagnosed with any of the below lung diseases. Similarly caregivers and family members associated with these diseases would be excluded.
  5. * Sarcoid
  6. * Lymphangioleiomyomatosis (LAM)
  7. * Pulmonary alveolar proteinosis (PAP)
  8. * Cystic fibrosis (CF)
  9. * Amyloidosis

Contacts and Locations

Study Contact

Misha Cadet, MPH
CONTACT
312-414-1590
mcadet@pulmonaryfibrosis.org
Joseph Colbert, BA
CONTACT
734-615-9813
pffr-dcc-pm@umich.edu

Principal Investigator

Kevin R Flaherty, MD
STUDY_CHAIR
Pulmonary Fibrosis Foundation

Study Locations (Sites)

Pulmonary Fibrosis Foundation
Chicago, Illinois, 60611
United States

Collaborators and Investigators

Sponsor: Pulmonary Fibrosis Foundation

  • Kevin R Flaherty, MD, STUDY_CHAIR, Pulmonary Fibrosis Foundation

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2022-07-11
Study Completion Date2025-07-01

Study Record Updates

Study Start Date2022-07-11
Study Completion Date2025-07-01

Terms related to this study

Additional Relevant MeSH Terms

  • Pulmonary Fibrosis
  • Interstitial Lung Disease
  • Lung Fibrosis
  • Idiopathic Pulmonary Fibrosis