Creating a tool to measure quality of life for patients with chronic skin issues after blood stem cell transplants
Development and validation of a patient-reported outcome measure to improve quality of life related to cutaneous chronic GVHD
This study is all about listening to people with chronic graft versus host disease affecting their skin to create a tool that helps understand their experiences better, so we can improve treatments and make life a little easier for them.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Pennsylvania NIH-funded |
| Lab location | 1 site (Philadelphia, United States) |
| Project ID | NIH-11033278 on NIH RePORTER |
What this research studies
This research focuses on developing a patient-reported outcome measure specifically for individuals suffering from chronic graft versus host disease (cGVHD) affecting the skin. The approach involves gathering insights directly from patients to understand their experiences and challenges, which will help in designing better treatment options. The research will transition from analyzing existing data to conducting new studies that aim to improve the quality of life and overall health outcomes for these patients. By validating this measure, the research seeks to ensure that patient perspectives are included in treatment evaluations and decisions.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals who have been diagnosed with chronic graft versus host disease affecting their skin following blood stem cell transplantation.
Not a fit: Patients who do not have chronic graft versus host disease or those with acute forms of the condition may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved treatment strategies and enhanced quality of life for patients with chronic skin cGVHD.
How similar studies have performed: Previous research has shown success in developing patient-reported outcome measures for other chronic conditions, indicating a promising potential for this approach in cGVHD.
Where this research is happening
Philadelphia, United States
- University of Pennsylvania — Philadelphia, United States (Active)
Researchers
- Principal investigator: Baumrin, Emily — University of Pennsylvania
- Study coordinator: Baumrin, Emily
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.