Dr. Liza-Marie Johnson and her research team at St. Jude Children's Research Hospital seek to learn more about the unique needs of patients and parents of children with rare diseases who are considering novel experimental gene therapy treatments.
In the GENETX study, the team will interview patients, caregivers, and healthcare workers of patients with rare genetic diseases. The interviews will provide information on their attitudes, beliefs, and concerns about gene therapy in both clinical and research settings. Using these insights, the team will develop an online platform providing educational content and patient decision aids for patients and their families.
We want to share correct, easy-to-understand information about gene therapy, so patients and families can speak with their care teams about it. By participating in this study, you will help us create online resources for other patients/families with a rare disease.
We use cookies to analyze website traffic and optimize your website experience. By accepting our use of cookies, your data will be aggregated with all other user data.