Preparing adults with cystic fibrosis for lung transplant conversations and choices
Preparation for lung transplant discussions and decisions among people with cystic fibrosis
This project offers a web program called Take on Transplant to help adults with cystic fibrosis learn about lung transplant and feel ready to talk and decide.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Washington NIH-funded |
| Lab location | 1 site (Seattle, United States) |
| Project ID | NIH-11262180 on NIH RePORTER |
What this research studies
As a person with CF, you would use Take on Transplant (ToT), a web-based resource that combines up-to-date, CF-specific medical information with personal stories from patients and caregivers. The research team is running a multicenter randomized trial that compares ToT to an attention-control resource to see which better prepares people for transplant discussions. Participants across several CF clinics will complete surveys and some interviews so the team can measure knowledge, feelings about transplant, and decision readiness. The study uses mixed methods to track changes over time and understand people's experiences with the resources.
Who could benefit from this research
Good fit: Adults (age 21+) with cystic fibrosis, especially those approaching advanced lung disease or considering lung transplant, are the ideal candidates.
Not a fit: Children under 21, people with CF who are not considering transplant, or those without reliable internet access may not gain benefit from this web-based program.
Why it matters
Potential benefit: If successful, ToT could help more adults with CF make informed, less anxious decisions about lung transplant and could increase timely referrals for transplant evaluation.
How similar studies have performed: Other web-based decision aids and patient education programs have improved knowledge and preparation in serious illnesses, but applying a CF-specific transplant program with personal narratives is relatively new.
Where this research is happening
Seattle, United States
- University of Washington — Seattle, United States (Active)
Researchers
- Principal investigator: Ramos, Kathleen Jessica — University of Washington
- Study coordinator: Ramos, Kathleen Jessica
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.