Huntington's Disease Community Perspectives on Desired Characteristics of Disease Modifying Therapies.
Michele C GornickKerry A RyanPraveen DayaluNoelle E CarlozziRoger L AlbinDarin B ZahuranecPublished in: Tremor and other hyperkinetic movements (New York, N.Y.) (2021)
In-depth interviews with the Huntington's disease community were used to explore patient and family preferences regarding potential disease modifying therapies. Many wanted symptom delay of 5-10 years, though some considered shorter delays acceptable for altruistic reasons. Opinions on trade-offs varied, suggesting larger preference studies are needed to inform trial design.