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| Name | Class |
|---|---|
| Schwab Charitable Fund | UNKNOWN |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Huntington's disease | Individuals who carry the Huntington's disease mutation. Individuals with pre-manifest or manifest disease at all disease stages are welcome |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| 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. |
| Measure | Description | Time Frame |
|---|---|---|
| Unified Huntington's Disease Rating Scale (UHDRS) | Neurological exam with a neurologist to document the motor exam | Once a year in-person and 3 times a year remotely, until death or dropout of the study (average approximately 1 year) |
| Measure | Description | Time Frame |
|---|---|---|
| Timed Up and Go (TUG) | Timed stand from chair and walk | Once a year in-person and 3 times a year remotely, until death or dropout of the study (average approximately 1 year) |
| 30-second Chair Stand Test |
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Inclusion Criteria:
Exclusion Criteria:
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community, neurology clinics, hospital, huntington's disease centers of excellence.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Minhtrang Chu, Study Coordinator | Contact | 650-250-3160 | mtchu@stanford.edu | |
| Olivia Lu, Study Coordinator | Contact | 650-374-9286 | olivialu@stanford.edu |
| Name | Affiliation | Role |
|---|---|---|
| Kyan Younes, MD | Stanford University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Stanford University | Recruiting | Palo Alto | California | 94304 | United States |
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| ID | Term |
|---|---|
| D006816 | Huntington Disease |
| ID | Term |
|---|---|
| D001480 | Basal Ganglia Diseases |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
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| ID | Term |
|---|---|
| D001800 | Blood Specimen Collection |
| D014554 | Urination |
| ID | Term |
|---|---|
| D013048 | Specimen Handling |
| D019411 | Clinical Laboratory Techniques |
| D019937 | Diagnostic Techniques and Procedures |
| D003933 | Diagnosis |
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Blood, optional cerebrospinal fluid, optional skin biopsy, videos of motor exam, mobile app-based testing.
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,
| Once a year in-person and 3 times a year remotely, until death or dropout of the study (average approximately 1 year) |
| D003704 | Dementia |
| D002819 | Chorea |
| D020820 | Dyskinesias |
| D009069 | Movement Disorders |
| D020271 | Heredodegenerative Disorders, Nervous System |
| D019636 | Neurodegenerative Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D003072 | Cognition Disorders |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
| D011677 | Punctures |
| D013514 | Surgical Procedures, Operative |
| D008919 | Investigative Techniques |
| D014553 | Urinary Tract Physiological Phenomena |
| D012101 | Reproductive and Urinary Physiological Phenomena |