Skip to main content
OpenTrials
Recruiting

NCT Number: NCT06941662

Huntington's Disease Biobank: Advancing Remote Monitoring and Deep Phenotyping

This observational study aims to identify novel biomarkers of disease onset and progression in Huntington's disease by integrating remote monitoring with fluid biomarkers. Using video-based computer vision and mobile app-based cognitive assessments combined with machine learning algorithms, we aim to develop markers that can be used by Huntington's disease patients at home.

Using machine learning to analyze videos of movement will capture the movements with an accuracy that will be as good as seeing an expert neurologist. These individualized markers can be followed over time to evaluate symptoms onset and change. The study will track disease progression and correlate these digital markers with changes in plasma and cerebrospinal fluid. The ultimate goal is to advance biomarker discovery and therapeutic development for Huntington's disease.

The study includes one in-person visit per year. A remote visit via Zoom or Facetime (15 min) every three months to record videos of movement. We can also share cutting-edge wristbands and a mobile phone app.

Recruiting

Interested in participating?

Request Info

Key information

Conditions

Huntington Disease Basal Ganglia Diseases Brain Diseases Central Nervous System Diseases Chorea Cognition Disorders Congenital, Hereditary, and Neonatal Diseases and Abnormalities Dementia Dyskinesias Genetic Diseases, Inborn Heredodegenerative Disorders, Nervous System Mental Disorders Movement Disorders Nervous System Diseases Neurocognitive Disorders Neurodegenerative Diseases

Sex eligibility

All sexes

Study type

Observational

Primary location

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Individuals with a positive test for the HD expansion mutation.

Exclusion criteria

  • Individuals with movement disorders with a negative test for the HD expansion mutation.

Treatment and study plan

computer vision, remote monitoring, blood, urine, wrist bands, mobile-app

Diagnostic Test

This is a low burden study that relies on a combination of cutting edge remote monitoring methods to deliver individualized evaluations to participants in their homes.

Primary outcomes

  1. Unified Huntington's Disease Rating Scale (UHDRS)

    Time frame: 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

Secondary outcomes

  1. Timed Up and Go (TUG)

    Time frame: Once a year in-person and 3 times a year remotely, until death or dropout of the study (average approximately 1 year)

    Timed stand from chair and walk

  2. 30-second Chair Stand Test

    Time frame: Once a year in-person and 3 times a year remotely, until death or dropout of the study (average approximately 1 year)

    Assesses lower body strength and endurance. Participants are instructed to stand up fully and sit back down as many times as possible within 30 seconds,

Study contacts

Contact information is provided by the study sponsor or research team.

Minhtrang Chu, Study Coordinator

CONTACT

[email protected]

650-250-3160

Olivia Lu, Study Coordinator

CONTACT

[email protected]

650-374-9286

Sponsors and collaborators

Lead sponsor

Stanford University

Other

Collaborators

  • Schwab Charitable Fund

Registry information

Official study title

HD Project: Neurodegenerative Disease Research Platform - Novel Remote Monitoring and Deep Phenotyping.

Important dates

Study start
2024
Primary completion
2035
Study completion
2035
First posted
Apr 24, 2025
Registry last updated
Apr 24, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Related clinical trials

Published trials that share one or more normalized conditions with this study.