F020 TAP-HD – a digital tracking study to explore fine motor and eye movements in Huntington’s disease – preliminary findings

<h3>Background</h3> Digital tracking of fine motor and eye movements provides an objective and repeatable means of assessing disease progression in Huntington’s disease (HD). Given there is data scarcity on the indirect costs associated with HD, we opportunistically explored this information. <h3>Aims</h3> TAP-HD, a pop-up study at HD family convention, explored utility of digital tracking of fine motor and eye movements in quantifying impairment in HD. HD-LIFT survey evaluated indirect and out-of-pocket cost burden in persons with HD (PwHD) and care givers. <h3>Methods</h3> We measured fine motor and eye movements digitally in PwHD, at risk and control subjects and corelated with investigator rated corresponding items from UHDRS®. Data regarding health status, functional status, out-of-pocket expenses and blood sample for neurofilament light levels were also collected. <h3>Results</h3> Of the 205 participants (18–80 years) 68% were women. Of 71 PwHD (median CAG 42) 51% and 70% reported motor and cognitive complaints respectively. Findings presented will focus on the speed, amplitude, frequency, and other digitally derived measures of fine motor control in PwHD versus controls. More than 60% of PwHD reported at least some change in their career and financial burden related to HD. Pandemic affected the caregivers more than the PwHD. The relationship between care costs and functional correlates of HD burden will be presented. <h3>Conclusion</h3> Large amount of data collected in TAP-HD confirms that acquiring useful multimodal data is possible in an informal family convention setting. Development of digital assessments that precisely quantify and track changes in motor function will enhance endpoint development for clinical trials in HD.