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Abstract Details

Identification of Functional Impairment in Individuals with Huntington’s Disease Chorea: A Modified Delphi Consensus Study
Movement Disorders
P2 - Poster Session 2 (11:45 AM-12:45 PM)
16-011

To develop a brief clinical tool that can help providers identify functional impairment due to Huntington’s disease chorea (HDC) using a modified Delphi panel.
Chorea is a defining motor symptom in patients with HD and can affect activities of daily living. Current assessments for HDC evaluate severity of involuntary movements. However, patients with HD are not always able to recognize and report functional impact of their chorea.
The final survey included potential questions to identify functional impairment due to HDC and was developed with steering committee guidance, exploratory interviews, and pilot testing. The panel included neurologists treating patients with HD, patients with HDC, and care partners of patients with HDC. The modified Delphi panel included 2 rounds of anonymized surveys conducted virtually from 6/30-7/31/2025 and 8/21-9/15/2025. Questions were rated from 1-9, in which “irrelevant” (1-3) denoted not important/meaningful to ask; “uncertain” (4-6) important/meaningful to ask, but not critical; ”relevant” (7-9) important/meaningful to ask. In Round 2, participants were invited to keep or revise their responses to Round 1 questions. Questions were considered relevant if the median rank across all 3 groups was 7-9. Consensus was defined as item’s ratings having an IQR≤2 with all median responses falling in one rating group.
Seventeen neurologists, 17 patients, and 13 care partners participated in the panel. Nearly all questions were considered relevant across groups, and all relevant questions in Round 1 remained relevant in Round 2. Consensus was reached for 15/29 (52%) questions in Round 1 and 24/29 (83%) in Round 2. Overall, questions identifying functional impairments in speech, gait and mobility, activities of daily living, and social life were considered the most important and relevant.
The Delphi panel results will be used to guide development of a novel clinical tool to assist providers in identifying functional impairments due to HDC.
Authors/Disclosures
Olga Klepitskaya, MD, FAAN (Neurocrine Biosciences, Inc)
PRESENTER 		Dr. Klepitskaya has received personal compensation for serving as an employee of Neurocrine Biosciences, Inc. Dr. Klepitskaya has or had stock in Neurocrine Biosciences.
Lauren Seeberger, MD, FAAN Dr. Seeberger has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Neurocine Biosciences. Dr. Seeberger has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biohaven. Dr. Seeberger has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Neurocrine Biosciences. The institution of Dr. Seeberger has received research support from Neurocrine. The institution of Dr. Seeberger has received research support from TEVA.
Ryan M. Fiano, PhD Dr. Fiano has received personal compensation for serving as an employee of Cencora. Dr. Fiano has stock in Cencora.
Zade Hikmat, PharmD Mr. Hikmat has received personal compensation for serving as an employee of Cencora.
Sean Hinton, PhD (Neurocrine Biosciences) Dr. Hinton has received personal compensation for serving as an employee of Neurocrine Biosciences, Inc. Dr. Hinton has stock in Neurocrine Biosciences, Inc..
Emily Liu, MBA Ms. Liu has received personal compensation for serving as an employee of Cencora. Ms. Liu has stock in Cencora.
Katherine Necas, PharmD Dr. Necas has received personal compensation for serving as an employee of Cencora. Dr. Necas has stock in Cencora.
Justin Nedzesky, PharmD, MS Dr. Nedzesky has received personal compensation for serving as an employee of Neurocrine Biosciences. Dr. Nedzesky has stock in Neurocrine Biosciences.
Michael Serbin (Neurocrine Biosciences) Michael Serbin has received personal compensation for serving as an employee of Neurocrine Biosciences, Inc. Michael Serbin has stock in Neurocrine Biosciences, Inc.
Dwight Tapp, PhD (Neurocrine Biosciences Inc.) Dr. Tapp has received personal compensation for serving as an employee of Neurocrine Biosciences Inc.. Dr. Tapp has stock in Neurocrine Biosciences Inc..
Victor W. Sung, MD (University of Alabama At Birmingham) Dr. Sung has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Teva Neuroscience. Dr. Sung has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Genentech. Dr. Sung has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurocrine. Dr. Sung has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UniQure.