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| Name | Class |
|---|---|
| Pfizer | INDUSTRY |
| Biogen | INDUSTRY |
| APDM Wearable Technologies | UNKNOWN |
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This research study is testing body-worn sensors to measure movement during simple tests of coordination, in order to evaluate the progression and severity of ataxia.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Spinocerebellar Ataxia-1 | individuals with a genetically confirmed diagnosis of SCA-1 | ||
| Spinocerebellar Ataxia-2 | individuals with a genetically confirmed diagnosis of SCA-2 | ||
| Spinocerebellar Ataxia-3 | individuals with a genetically confirmed diagnosis of SCA-3 | ||
| Spinocerebellar Ataxia-6 | individuals with a genetically confirmed diagnosis of SCA-6 | ||
| Freidreich's Ataxia | individuals with a genetically confirmed diagnosis of FA | ||
| FA Controls | Healthy, age-matched controls | ||
| SCA Controls | Healthy, age-matched controls |
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| Measure | Description | Time Frame |
|---|---|---|
| iSARA | measurements collected by wearable inertial sensors during instrumented Scale for the Assessment and Rating of Ataxia (iSARA) | 2 years |
| SARA | Scale for the Assessment and Rating of Ataxia (SARA) measurements evaluated by clinician to measure severity of spinocerebellar ataxia through coordination, speech, stance, and gait | 2 years |
| mFARS | modified Friedreich's Ataxia Rating Scale (mFARS) measurements evaluated by clinician compared to measure severity of Friedreich's ataxia through coordination, speech, stance, and gait | 2 years |
| Daily Life (UChicago site ONLY) | APDM SmartSox technology used to measure daily life activity(movement, falls, etc.) of all University of Chicago subjects | 2 weeks |
| Ataxia App on Watch/iPhone | Bi-weekly assessments completed on Ataxia Application for Apple Watches and iPhones. Data collected includes active monitoring of speech, stance, coordination, gait and patient-reported symptoms. | 2 years |
| Patient-Reported Questionnaires of Health | Activities, Balance, and Confidence (ABC) Questionnaire; EQ-5D-5L Health Questionnaire; Modified Fatigue Impact Scale (MFIS-5); Activities of Daily Living (ADLs) | 2 years |
| Falls Questionnaire | Automatic email sent out to subjects inquiring about any falls and near falls they have experienced during the past month |
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Inclusion Criteria:
Exclusion Criteria:
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ataxia clinics
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of California-Los Angeles | Los Angeles | California | 90095 | United States | ||
| The University of Chicago |
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| ID | Term |
|---|---|
| D020754 | Spinocerebellar Ataxias |
| D017827 | Machado-Joseph Disease |
| D005621 | Friedreich Ataxia |
| ID | Term |
|---|---|
| D002524 | Cerebellar Ataxia |
| D002526 | Cerebellar Diseases |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
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| 2 years |
| Functional Staging | Clinician evaluates severity of ataxia symptoms. | 2 years |
| Timed 25 Foot Walk | Subjects walk for 25 feet, as quickly and safely as possible, while being timed | 2 years |
| Chicago |
| Illinois |
| 60637 |
| United States |
| Johns Hopkins Medicine | Baltimore | Maryland | 21231 | United States |
| Mass General Hospital | Boston | Massachusetts | 02114 | United States |
| Oregon Health & Science University | Portland | Oregon | 97239 | United States |
| D009422 |
| Nervous System Diseases |
| D013132 | Spinocerebellar Degenerations |
| D013118 | Spinal Cord Diseases |
| D020271 | Heredodegenerative Disorders, Nervous System |
| D019636 | Neurodegenerative Diseases |
| D001259 | Ataxia |
| D020820 | Dyskinesias |
| D009461 | Neurologic Manifestations |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D028361 | Mitochondrial Diseases |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |