Preparing adults with cystic fibrosis for lung transplant conversations and choices
Official title: Preparation for lung transplant discussions and decisions among people with cystic fibrosis
Funded at University of Washington · NIH-11262180 · Data updated 2026-11-12
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 start | April 19, 2023 |
| Project end | January 31, 2028 |
| Funding year | 2026 |
| Award (this year) | $677,794 |
| NIH project number | 5R01NR020470-04 |
| Project ID | NIH-11262180 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adults (age 21+) with cystic fibrosis, especially those approaching advanced lung disease or considering lung transplant, are the ideal candidates.
✕Less likely to help
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.
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.
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 gone: 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
-
University of Washington
Seattle, United States Active
Researchers
- Principal investigator: Ramos, Kathleen Jessica — University of Washington
- Study coordinator: Ramos, Kathleen Jessica
Related research
Other NIH-funded projects on the same topics.
-
Helping cystic fibrosis patients prepare for lung transplant discussions
This study is all about helping people with cystic fibrosis understand their options for lung transplants better, especially those who might face challenges getting referred for one, by using a friendly online resource called 'Take on Transplant' that shares helpful information and personal stories to make the process
-
Blocking CFTR in the cervix to prevent conception without hormones
A non-hormonal approach aims to stop sperm from entering the uterus by making cervical mucus too thick for sperm, potentially offering a new contraception option.
-
Exercise-based frailty program for people awaiting lung transplants
A tailored exercise and lifestyle program is being tested to reduce frailty and improve outcomes for people waiting for a lung transplant.
-
Optimizing Treatments for People with Cystic Fibrosis on Highly Effective Modulator Therapy
A real-world study in people with cystic fibrosis on highly effective CFTR modulator therapy to understand how traditional CF treatments can be adjusted safely.
-
Elastin-like particles to deliver gene therapies for cystic fibrosis
A new nanoparticle system is being developed to deliver genetic therapies directly to the lungs of people with cystic fibrosis, including those with nonsense mutations.
-
Pharmacogenomic Predictors of Clinical Responses in Cystic Fibrosis using Targeted WGS
A study looking at how genetic information from whole-genome sequencing can predict how people with cystic fibrosis respond to medications, using a focused set of pharmacogenomic genes.
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.