PRISM-HD: Patient-Reported Impact of Symptoms in Huntington Disease

Alistair M Glidden, Elizabeth A Luebbe, Molly J Elson, Steven B Goldenthal, Christopher W Snyder, Christine E Zizzi, E Ray Dorsey & Chad R Heatwole
OBJECTIVE: To determine the frequency and relative importance of symptoms experienced by adults with Huntington disease (HD) and to identify factors associated with a higher disease burden. METHODS: We performed 40 qualitative interviews (n = 20 with HD, n = 20 caregivers) and analyzed 2,082 quotes regarding the symptomatic burden of HD. We subsequently performed a cross-sectional study with 389 participants (n = 156 with HD [60 of whom were prodromal], n = 233 caregivers)...
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These counts follow the COUNTER Code of Practice, meaning that Internet robots and repeats within a certain time frame are excluded.
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