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First received: March 30, 2023

Clinical Trial: Gene Therapy Communication: Use of a Needs Assessment to Drive Decision-AIDS for Gene Therapy for Rare Diseases (GENETX)

Study Status: Completed

Recruit Status: RECRUITING

Condition: Sickle Cell Disease

Study Type: OBSERVATIONAL


Official Title: Gene Therapy Communication: Use of a Needs Assessment to Drive Decision-AIDS for Gene Therapy for Rare Diseases (GENETX)

Brief 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.

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