Helping cystic fibrosis patients prepare for lung transplant discussions
Official title: Preparation for lung transplant discussions and decisions among people with cystic fibrosis
Funded at University of Washington · NIH-11009036 · Data updated 2026-11-12
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 less stressful.
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 | 2025 |
| Award (this year) | $622,899 |
| NIH project number | 5R01NR020470-03 |
| Project ID | NIH-11009036 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are adults with cystic fibrosis who have a forced expiratory volume (FEV1) of less than 30% and may be considering lung transplant options.
✕Less likely to help
Patients with cystic fibrosis who are not eligible for lung transplant or those who are already in the process of receiving a transplant may not benefit from this research.
What this research studies
This research focuses on improving the decision-making process for lung transplant among individuals with cystic fibrosis (CF). It aims to address the barriers that prevent patients from being referred for lung transplants, particularly those from disadvantaged backgrounds. The study involves the development and testing of a web-based resource called 'Take on Transplant' (ToT), which provides educational materials and personal stories to enhance understanding and reduce anxiety related to lung transplant discussions. By collaborating with patients, caregivers, and healthcare providers, the research seeks to empower patients to make informed decisions about their treatment options.
Why it matters
Potential benefit: If successful, this research could significantly increase the number of cystic fibrosis patients who are appropriately referred for lung transplants, potentially improving survival rates.
How similar studies have gone: Previous research has shown that educational interventions can improve patient understanding and decision-making in transplant contexts, suggesting that this approach may be effective.
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.
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Preparing adults with cystic fibrosis for lung transplant conversations and choices
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.
-
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.
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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.
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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.