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

NCT ID: NCT06941662

Last Updated: 2025-04-24

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

200 participants

Study Classification

OBSERVATIONAL

Study Start Date

2024-06-01

Study Completion Date

2035-12-31

Brief Summary

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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

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Conditions

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Huntington Disease

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Huntington's disease

Individuals who carry the Huntington's disease mutation. Individuals with pre-manifest or manifest disease at all disease stages are welcome

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

Intervention Type 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.

Interventions

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

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.

Intervention Type DIAGNOSTIC_TEST

Eligibility Criteria

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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.
Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Schwab Charitable Fund

UNKNOWN

Sponsor Role collaborator

Stanford University

OTHER

Sponsor Role lead

Responsible Party

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Kyan Younes

Assistant Professor

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Kyan Younes, MD

Role: PRINCIPAL_INVESTIGATOR

Stanford University

Locations

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Stanford University

Palo Alto, California, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Minhtrang Chu, Study Coordinator

Role: CONTACT

650-250-3160

Olivia Lu, Study Coordinator

Role: CONTACT

650-374-9286

Facility Contacts

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Minhtrang Chu, Study Coordinator

Role: primary

650-250-3160

Olivia Lu, Study Coordinator

Role: backup

650-374-9286

Other Identifiers

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74659

Identifier Type: -

Identifier Source: org_study_id

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