Longitudinal Assessment of Brain Structure and Function in Juvenile-onset Huntington's Disease
2 other identifiers
observational
37
1 country
5
Brief Summary
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:
- Is brain development different in JoHD than Adult-onset Huntington's Disease (AoHD)?
- Can reliable biomarkers for JoHD be found in brain structure and function? Participants will be asked to complete cognitive tests, behavioral assessments, physical and neurologic evaluation, and MRI. Data collected will be compared to populations who are at-risk for HD and who have been diagnosed with HD as adults.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P25-P50 for all trials
Started Jan 2020
Longer than P75 for all trials
5 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
January 1, 2020
CompletedFirst Submitted
Initial submission to the registry
December 16, 2022
CompletedFirst Posted
Study publicly available on registry
February 1, 2023
CompletedPrimary Completion
Last participant's last visit for primary outcome
August 31, 2026
ExpectedStudy Completion
Last participant's last visit for all outcomes
August 31, 2026
April 30, 2026
March 1, 2026
6.7 years
December 16, 2022
April 25, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
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
Secondary Outcomes (1)
Quantitative assessment of cognitive skills and behavioral factors
5 hours out of 7-8 hour testing day
Other Outcomes (3)
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
Study Arms (1)
JoHD
Children, adolescents, and young adults ages 4-30 who have been clinically diagnosed with Juvenile-onset Huntington's Disease
Eligibility Criteria
Children, adolescents and young adults ages 4-30 who have been clinically diagnosed with Juvenile-onset Huntington's Disease
You may qualify if:
- Clinical diagnosis of JoHD
- Aged 4-30
You may not qualify if:
- Metal in body
- History of head trauma, brain tumor, seizures or epilepsy unrelated to JoHD
- History of major surgery or serious chronic medical conditions other than JoHD
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- The University of Texas Health Science Center, Houstoncollaborator
- Children's Hospital of Philadelphiacollaborator
- UCL Queen Square Institute of Neurologycollaborator
- National Institute of Neurological Disorders and Stroke (NINDS)collaborator
- University of Iowalead
- University of California, Daviscollaborator
- George-Huntington-Institut GmbHcollaborator
- Columbia Universitycollaborator
Study Sites (5)
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
Related Publications (1)
Nopoulos PC. Special Issue: Juvenile Onset Huntington's Disease. Brain Sci. 2020 Sep 20;10(9):652. doi: 10.3390/brainsci10090652.
PMID: 32962249RESULT
Related Links
Biospecimen
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.
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Peggy C Nopoulos, MD
University of Iowa
Study Design
- Study Type
- observational
- Observational Model
- CASE CONTROL
- Time Perspective
- CROSS SECTIONAL
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Professor
Study Record Dates
First Submitted
December 16, 2022
First Posted
February 1, 2023
Study Start
January 1, 2020
Primary Completion (Estimated)
August 31, 2026
Study Completion (Estimated)
August 31, 2026
Last Updated
April 30, 2026
Record last verified: 2026-03
Data Sharing
- IPD Sharing
- Will not share
Aggregate, de-identified data may be shared with approved collaborators, but individual participant data will not be shared.