Educational resource to improve lung transplant awareness in cystic fibrosis patients
Preparation for Lung Transplant Discussions and Decisions Among People With Cystic Fibrosis
This study is testing a new educational resource to help cystic fibrosis patients with low lung function better understand lung transplants and make informed choices 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 | 11 sites (Los Angeles, California and 10 other locations) |
| Trial ID | NCT06030206 on ClinicalTrials.gov |
What this trial studies
This clinical trial aims to enhance awareness and understanding of lung transplantation among patients with cystic fibrosis (CF) who have low lung function. It involves a multi-site randomized controlled trial comparing an investigator-designed educational resource with a publicly available transplant education resource. The goal is to empower patients to engage in shared decision-making regarding lung transplant options, particularly for those from marginalized communities who may face barriers to referral. By promoting informed discussions about lung transplant, the study seeks to reduce mortality rates among CF patients who are not referred for transplantation.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with cystic fibrosis and have a forced expiratory volume in 1 second (FEV1) of less than 50% of predicted.
Not a fit: Patients who are already lung transplant recipients or unable to provide informed consent will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could significantly increase the number of cystic fibrosis patients who are appropriately referred for lung transplantation, potentially saving lives.
How similar studies have performed: Previous studies have indicated that educational interventions can improve patient awareness and decision-making in healthcare, suggesting potential success for this approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosis of cystic fibrosis * FEV1 less than 50% of predicted Exclusion Criteria: * People who are unable to provide informed consent * People who are lung transplant recipients * 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
Los Angeles, California and 10 other locations
- University of California at Los Angeles (UCLA) — Los Angeles, California, United States (Recruiting)
- National Jewish Health — Denver, Colorado, United States (Recruiting)
- Yale University — New Haven, Connecticut, United States (Recruiting)
- University of Kansas — Kansas City, Kansas, United States (Recruiting)
- Maine Health — Portland, Maine, United States (Recruiting)
- Johns Hopkins University — Baltimore, Maryland, United States (Not_yet_recruiting)
- University of Minnesota — Minneapolis, Minnesota, United States (Recruiting)
- University of Cincinnati — Cincinnati, Ohio, United States (Recruiting)
- University of Pittsburgh — Pittsburgh, Pennsylvania, United States (Recruiting)
- Baylor College of Medicine — Houston, Texas, United States (Not_yet_recruiting)
- University of Washington Medical Center - Montlake — Seattle, Washington, United States (Recruiting)
Study contacts
- Principal investigator: Kathleen Ramos, MD, MSc — 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.