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Longitudinal Clinical and Biological Characteristics in Juvenile-Onset Huntington's Disease
Journal article   Open access   Peer reviewed

Longitudinal Clinical and Biological Characteristics in Juvenile-Onset Huntington's Disease

Jordan L Schultz, Douglas R Langbehn, Hend M Al-Kaylani, Ellen van der Plas, Timothy R Koscik, Eric A Epping, Patricia B Espe-Pfeifer, Erin P Martin, David J Moser, Vincent A Magnotta, …
Movement disorders, Vol.38(1), pp.113-122
01/2023
DOI: 10.1002/mds.29251
PMCID: PMC9851979
PMID: 36318082
url
https://www.ncbi.nlm.nih.gov/pmc/articles/9851979View
Open Access

Abstract

BACKGROUNDJuvenile-onset Huntington's disease (JOHD) is a rare form of Huntington's disease (HD) characterized by symptom onset before the age of 21 years. Observational data in this cohort is lacking. OBJECTIVES Quantify measures of disease progression for use in clinical trials of patients with JOHD. METHODS Participants who received a motor diagnosis of HD before the age of 21 were included in the Kids-JOHD study. The comparator group consisted of children and young adults who were at-risk for inheriting the genetic mutation that causes HD, but who were found to have a CAG repeat in the non-expanded range (gene non-expanded [GNE]). RESULTS Data were obtained between March 17, 2006, and February 13, 2020. There were 26 JOHD participants and 78 GNE participants who were comparable on age (16.03 vs. 14.43, respectively) and sex (53.8% female vs. 57.7% female, respectively). The mean annualized decrease in striatal volume in the JOHD group was -3.99% compared to -0.06% in the GNE (mean difference [MD], -3.93%; 95% confidence intervals [CI], [-4.98 to -2.80], FDR < 0.0001). The mean increase in the Unified Huntington's Disease Rating Scale Total Motor Score per year in the JOHD group was 7.29 points compared to a mean decrease of -0.21 point in the GNE (MD, 7.5; 95% CI, [5.71-9.28], FDR < 0·0001). CONCLUSIONS These findings demonstrate that structural brain imaging and clinical measures in JOHD may be potential biomarkers of disease progression for use in clinical trials. Collaborative efforts are required to validate these results in a larger cohort of patients with JOHD. © 2022 International Parkinson and Movement Disorder Society.

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