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

Recruiting

• Conditions: Huntington Disease

• Registration Number: NCT06941662
• Lead Sponsor: Stanford University

Brief Summary

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.

Detailed Description

Not available

Study Timeline

• Study Start: 2024-06-01
• Status Verified: 2025-04
• Study First Submitted: 2025-04-02
• Study First Submitted QC: 2025-04-22
• Last Update Submitted: 2025-04-22
• Study First Posted: 2025-04-24
• Last Update Posted: 2025-04-24
• Primary Completion: 2035-12
• Study Completion: 2035-12

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 200

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.

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
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

Secondary Outcome Measures

Name	Time	Method
Timed Up and Go (TUG)	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
30-second Chair Stand Test	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,

Trial Locations

Locations (1)

Stanford University; 🇺🇸 Palo Alto, California, United States