The National Bleeding Disorders Foundation is proud to support an important research initiative led by Emily Agen, a genetic counseling graduate student at the University of Michigan, who is investigating our community's understanding of hemophilia gene therapy treatments.
This groundbreaking study aims to bridge potential knowledge gaps and enhance educational resources about gene therapy options for people living with hemophilia.
"Understanding what our community knows about available gene therapy treatments is crucial for improving how we communicate about these innovative treatment options," says Agen.
Community members aged 18 and older living with hemophilia are invited to participate in this valuable research by completing a 20-minute anonymous online survey. The study team is particularly interested in learning about participants' current knowledge of gene therapy treatments and their experiences with existing educational materials.
To recognize participants' time and contributions, the research team is offering the chance to win one of four $50 gift cards through a raffle drawing for those who complete the survey.
Key Study Details:
- Eligibility: Adults (18+) living with hemophilia
- Time Commitment: Approximately 20 minutes
- Format: Anonymous online survey
- Compensation: Chance to win one of four $50 gift cards
- Survey Link
For questions about the study, interested participants can contact Emily Agen at emagen@med.umich.edu or faculty advisor Kari Branham, MS, CGC, at haag@med.umich.edu.
Your insights could make a significant difference in how information about these innovative treatments is shared with our community.
Writer: Kyla Clark, Director of PR, Marketing and Communications
