Huntington's Disease Biobank: Advancing Remote Monitoring and Deep Phenotyping
This observational study is looking for people with Huntington's disease (HD) to help researchers understand how the disease starts and changes over time. It uses a combination of remote monitoring tools like computer vision (analyzing videos of movement), mobile apps for thinking skills, and wearable wrist bands. You would also provide blood and urine samples. The goal is to find new ways to track HD progression from your home, making it easier to evaluate symptoms. Researchers will track your disease progression and compare these digital markers with changes in your blood and cerebrospinal fluid. The study plans to enroll 200 participants.
- Study design
- This is an observational study, meaning it watches and collects information without giving a specific treatment. It aims to enroll 200 participants.
- What's involved
- You would have an in-person evaluation once a year and remote evaluations three times a year. You would also provide blood and urine samples, and use wrist bands and a mobile app.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants will be followed until death or dropout, with an average follow-up of approximately one year.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Huntington's Disease Biobank: Advancing Remote Monitoring and Deep Phenotyping
At a glance
Conditions
NCT06941662
Where you'd take part
This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.
Stanford University
Palo Alto, Californiastudy coordinator listed
Recruiting
Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.
Study leadership
- Kyan Younes, MD · PRINCIPAL_INVESTIGATOR · Stanford University
Who to contact
Opens a ready-to-send draft in your own email app — review before sending.
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Inclusion
Exclusion
What this trial measures
- Unified Huntington's Disease Rating Scale (UHDRS)Once a year in-person and 3 times a year remotely, until death or dropout of the study (average approximately 1 year)
Neurological exam with a neurologist to document the motor exam