ResearchCLINICALTRIALSMay 7
Trial Now Recruiting: Gene Therapy Communication: Use of a Needs Assessment to Drive Decision-AIDS for Gene Therapy for Rare Diseases (GENETX) (NCT05810181)
Researchers at St. Jude Children's Research Hospital are looking for 145 patients and families to help them understand what information people need to make decisions about gene therapy for rare diseases like sickle cell disease. The study will use what they learn to create a website with educational materials and decision-making tools to help patients and families understand their gene therapy options.
WHY IT MATTERSThis study is actively recruiting now and will directly shape how gene therapy information is presented to patients and families, making it easier for you to understand your treatment options before making decisions.