Shared Decision-Making for Hemophilia Gene Therapy

Dr. Courtney Thornburg and her research team at Rady Children’s Hospital-San Diego (RCHSD) Hemophilia Treatment Center are conducting a research study about shared decision-making for hemophilia gene therapy. The study is funded by the National Hemophilia Foundation Innovative Investigator Award and BioMarin Pharmaceuticals.

The study is designed to develop shared decision-making tools that can be used in clinical discussions with patients with hemophilia who may be eligible for gene therapy. Dr. Thornburg and her research team developed a prototype of the Clinician Decision Box tool, and they are looking for feedback from HTC healthcare providers prior to pilot testing with patients. The research involves reviewing the tool and providing feedback during a 45-60 minute interview by telephone or video conference with a member of the research team. Participants who complete the interview will receive a $100 electronic gift card to compensate for their time.

If you would like to participate, please contact our team via e-mail at: [email protected] or via phone at: 858-966-1700 x 227376 or complete this four-question form to provide your contact information to the study team.