Sponsor study identifier
Secondary identifiers
observational
37
1 country
5
Study Start
January 1, 2020
Actual (reported)Primary Completion
August 31, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Study Completion
August 31, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
The goal of this observational study is to learn about brain development in Juvenile-onset Huntington's Disease (JoHD). The main questions it aims to answer are:
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
August 31, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
January 1, 2020
Actual (reported)December 16, 2022
Actual (reported)February 1, 2023
Actual (reported)August 31, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
August 31, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Volume of brain structures as measured by Magnetic Resonance Imaging (MRI)
Magnetic Resonance Imaging (MRI) and Diffusion Tensor Imaging (DTI) data will be analyzed to assess brain structure based upon variables including global volume, total cerebral spinal fluid, subregion volumes, cortical surface anatomy including cortical depth, surface area and gyral shape, and symmetry between brain hemispheres.
60-90 minutes out of 7-8 hour testing day
Quantitative assessment of cognitive skills and behavioral factors
5 hours out of 7-8 hour testing day
Quantitative assessment of motor performance
1 hour out of 7-8 hour testing day
Quantification of Neurofilament Light
10 minutes for blood draw out of 7-8 hour testing day
Demographic and Physiological Data
10 minutes for vitals collection out of 7-8 hour testing day
Children, adolescents, and young adults ages 4-30 who have been clinically diagnosed with Juvenile-onset Huntington's Disease
Children, adolescents and young adults ages 4-30 who have been clinically diagnosed with Juvenile-onset Huntington's Disease
University of California Davis
Sacramento, California, 95817, United States
University of Iowa Hospitals and Clinics, Department of Psychiatry
Iowa City, Iowa, 52242, United States
Children's Hospital of Philadelphia with the University of Pennsylvania
Philadelphia, Pennsylvania, 19146, United States
Vanderbilt University Medical Center
Nashville, Tennessee, 37232, United States
University of Texas Health Science Center at Houston
Houston, Texas, 77030, United States
Nopoulos PC. Special Issue: Juvenile Onset Huntington's Disease. Brain Sci. 2020 Sep 20;10(9):652. doi: 10.3390/brainsci10090652.
Bio-specimens are collected and retained for all participants for future research. Specimens are a single sample of 3-4 teaspoons of blood drawn from the arm that consist of whole blood, plasma and DNA.
Peggy C Nopoulos, MD
University of Iowa
37 participants (actual enrollment reported by the registry).
First Submitted
December 16, 2022
First Posted
February 1, 2023
Study Start
January 1, 2020
Actual (reported)Contact the study team to confirm eligibility.
Primary Completion
August 31, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Study Completion
August 31, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Last Updated
April 30, 2026
Record last verified: 2026-03
Aggregate, de-identified data may be shared with approved collaborators, but individual participant data will not be shared.
Download the complete ClinicalTrials.gov record imported by Syfrah, including fields not shown in this page. The registry may contain a newer revision.
Source: ClinicalTrials.gov.
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