Lung Transplant READY CF 2: CARING CF Ancillary RCT
Lung transplant is an option for treating end-stage lung disease in cystic fibrosis (CF). In the United States, more people with CF and low lung function die each year than undergo lung transplant. More than half of people with CF who die without a lung transplant were never referred for consideration. Patient preferen
| Condition(s) | Cystic Fibrosis |
|---|---|
| Status | Recruiting |
| Phase | NA |
| Study type | Interventional |
| Summary | Lung transplant is an option for treating end-stage lung disease in cystic fibrosis (CF). In the United States, more people with CF and low lung function die each year than undergo lung transplant. More than half of people with CF who die without a lung transplant were never referred for consideration. Patient preference not to undergo lung transplant may account for 25-40% of decisions to defer referral. Patients' health discussion networks function to support individuals in health related matters and may provide critical support during the lung transplant journey. Increasing awareness of lung transplant, and promoting the process of deliberation and utilization of social support, could reduce the number of people with CF who die without lung transplant. Additionally, the most common pati |
| Who can participate | Inclusion Criteria: * Identified as a caregiver or loved one of an individual with CF enrolled in the Lung Transplant READY CF 2 parent RCT, or * An individual with CF enrolled in the Lung Transplant READY CF 2 parent RCT Exclusion Criteria: * People who are unable to provide informed consent * Unable to read or understand English or Spanish to complete surveys or access the website (currently only available in English and Spanish) |
| Ages | 18 Years |
| Sex | All |
| Lead sponsor | University of Washington |
| Locations | Seattle, Washington, United States |
| Start date | 2023-09-06 |
| NCT ID | NCT06032273 |
| Official listing | https://clinicaltrials.gov/study/NCT06032273 |