Helping cystic fibrosis patients prepare for lung transplant discussions
Preparation for lung transplant discussions and decisions among people with cystic fibrosis
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 ID | NIH-11009036 on NIH RePORTER |
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.
Who could benefit from this research
Good fit: 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.
Not a fit: 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.
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 performed: 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
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.