Education program for lung transplant discussions in cystic fibrosis
Exploring Caregiver Needs While Supporting People with CF Learning About Lung Transplant
This study is testing a new education program to help people with cystic fibrosis and their caregivers talk more about lung transplants and make better decisions about their options.
Quick facts
| Phase | Not applicable |
|---|---|
| Study type | Interventional |
| Enrollment | 132 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University of Washington Academic / other |
| Locations | 1 site (Seattle, Washington) |
| Trial ID | NCT06032273 on ClinicalTrials.gov |
What this trial studies
This study aims to improve awareness and discussions around lung transplantation for individuals with cystic fibrosis (CF) and their caregivers. It focuses on addressing the barriers that prevent patients from being referred for lung transplant consideration, particularly in communities that are disproportionately impacted. The intervention involves an investigator-designed education website that facilitates ongoing discussions about lung transplant options and supports patients in making informed decisions. By enhancing social support and deliberation, the study seeks to reduce mortality rates among CF patients who may benefit from lung transplantation.
Who should consider this trial
Good fit: Ideal candidates include individuals with cystic fibrosis and their caregivers who are enrolled in the Lung Transplant READY CF 2 parent study.
Not a fit: Patients who are unable to provide informed consent or those who cannot read or understand English or Spanish will not benefit from this study.
Why it matters
Potential benefit: If successful, this initiative could lead to increased referrals for lung transplantation and improved survival rates for patients with cystic fibrosis.
How similar studies have performed: Other studies have shown success in improving patient outcomes through enhanced education and support, making this approach promising.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Identified as a caregiver or loved one of an individual with CF enrolled in the Lung Transplant READY CF 2 parent RCT, or * An individual with CF enrolled in the Lung Transplant READY CF 2 parent RCT Exclusion Criteria: * People who are unable to provide informed consent * Unable to read or understand English or Spanish to complete surveys or access the website (currently only available in English and Spanish)
Where this trial is running
Seattle, Washington
- University of Washington Medical Center - Montlake — Seattle, Washington, United States (Recruiting)
Study contacts
- Principal investigator: Kathleen Ramos, MD, MS — University of Washington
- Study coordinator: Lauren Bartlett, BS, CCRC
- Email: lrejman@uw.edu
- Phone: 503-583-2869
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.