Year: 2024
Type: conference-abstract
Abstract: Background Huntington Disease Society of America’s annual convention is attended by many families with Huntington Disease, which creates an apt research opportunity. At three consecutive conventions (2022-2024), CHDI conducted observational studies akin to pop-up events, which open suddenly and exist for a short time targeting specific audiences, hence named ‘pop-up’ studies. Methods In May 2024, a minimal risk IRB approved protocol with waiver of documentation of consent, HD-RAC24, was executed with goals to (i) answer specific research questions that can be addressed in a diverse cohort, (ii) provide accessible research opportunities to families with HD, (iii) and demonstrate the feasibility of pop-up studies involving simple assessments and uncomplicated equipment. The objective was to assess aspects of cognition, speech and motor skills and collect neurofilament light levels to develop assessments and biomarkers that can track disease progression. Any HD family member, regardless of genetic status, was able to participate. Results With support from the convention organizers and external collaborators, multiple assessment stations were set-up in conference rooms as a study site. Trained CHDI employees conducted study tasks while phlebotomists performed venipuncture. Following endorsement of consent participants completed one or more assessments. 180 participants enrolled in the study with 179 completing at least one assessment. Descriptive data analyses will be presented. Conclusion CHDI successfully conducted a multi-modular pop-up study over 3 days in an unconventional setting, providing families a unique opportunity to contribute to research. Pop-up studies collect sizeable data in an expedited, efficient, and cost-effective manner. These studies may provide relevant data for larger scale studies.
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402374364