Longitudinal Assessment of Brain Structure and Function in Juvenile-onset Huntington's Disease (NCT05707663) | Clinical Trial Compass
Active — Not RecruitingNot Applicable
Longitudinal Assessment of Brain Structure and Function in Juvenile-onset Huntington's Disease
United States37 participantsStarted 2020-01-01
Plain-language 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.
Who can participate
Age range
4 Years – 30 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Clinical diagnosis of JoHD
* Aged 4-30
Exclusion Criteria:
* 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
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Volume of brain structures as measured by Magnetic Resonance Imaging (MRI)
Timeframe: 60-90 minutes out of 7-8 hour testing day