Trial Now Recruiting: Gene Therapy Communication: Use of a Needs Assessment to Drive Decision-AIDS for Gene Therapy for Rare Diseases (GENETX) (NCT05810181)
WHY IT MATTERS
This 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.
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.
NCT ID: NCT05810181 Status: RECRUITING Conditions: Sickle Cell Disease Enrollment: 145 Sponsor: St. Jude Children's Research Hospital Summary: This prospective mixed-method interview study aims to qualitatively describe the beliefs, attitudes, and informational needs around gene therapy for rare pediatric diseases among patients and parents of children with a rare disease targeted for treatment using gene therapy techniques. Using learned insights, the team will develop an online platform providing educational content and patient decision aids for patients and their families.
ASK YOUR DOCTOR
If you or your child has sickle cell disease and are interested in gene therapy, ask your doctor if you're eligible for this study or contact St. Jude directly through clinicaltrials.gov using NCT05810181.