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| Name | Class |
|---|---|
| Massachusetts General Hospital | OTHER |
| Emory University | OTHER |
| Ohio State University | OTHER |
| Washington University School of Medicine |
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Creation of a large repository of induced pluripotent stem cells (iPSC), bio-fluid samples (blood and spinal fluid (optional)), and cell lines for ALS gene identification. This will be combined carefully with collected measures of the pattern of the symptoms people with ALS have and how these change over time. People with other motor neuron diseases and healthy controls will be included as comparisons
Patients will have 5 study visits; screening, 3, 6, 9 and 12 months. There will be a one year post-participation follow-up period, during which they will receive an email or phone call interview once every 3 months. During the first year, samples will be collected, breathing, muscle strength, spasticity, general function and cognitive behavior will be assessed. Healthy controls will have 2 study visits during which blood samples will be collected and questionnaires given.
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| Measure | Description | Time Frame |
|---|---|---|
| ALS Functional Rating Scale-Revised (ALSFRS-R) | 12 questions about patient's ability to function in certain activities of daily living. Each question is out of 4 with 4 being normal and 0 being completely impaired. | once every 3 months for one year |
| ALS Cognitive Behavioral Scale (ALS-CBS) | short measure of cognition and behavior in patients with ALS. The cognitive portion consists of 8 tasks with a perfect score being 20. The behavioral portion measures changes in personality and behavior since the onset of ALS symptoms as well as mood, pseudobulbar affect and fatigue and is completed by a family member or caregiver. A normal score is 45. | once every 3 months for one year |
| Slow Vital Capacity (SVC) | measurement of the maximum amount of air that can be exhaled following a deep breath. | once every 3 months for one year |
| Strength Testing with Hand Held Dynamometer (HHD) | muscle strength testing performed on upper and lower limbs, ankles, wrists and fingers using a small hand held device. These measurements are followed over time and compared to measure decline. | once every 3 months for one year |
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Inclusion Criteria:
Exclusion Criteria:
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patients with ALS, Primary Lateral Sclerosis Flail Arm ALS Progressive Muscular Atrophy Monomelic Amyotrophy Motor Neuron Disease Asymptomatic ALS Gene Carriers
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| Name | Affiliation | Role |
|---|---|---|
| Nicholas J Maragakis, MD | Johns Hopkins University | Principal Investigator |
| James D Berry, MD | Massachusetts Generel Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Cedars-Sinai Medical Center | Los Angeles | California | 90048 | United States | ||
| Emory University |
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| OTHER |
| Cedars-Sinai Medical Center | OTHER |
| University of California, Irvine | OTHER |
| Massachusetts Institute of Technology | OTHER |
| New York Genome Center | OTHER |
| Leandro P. Rizzuto Foundation | OTHER |
| Texas Neurology | UNKNOWN |
| Northwestern University Les Turner ALS Center | UNKNOWN |
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plasma, serum, DNA, Cerebrospinal fluid, induced pluripotent stem cells,
| Atlanta |
| Georgia |
| 30322 |
| United States |
| Northwestern University Feinberg School of Medicine | Chicago | Illinois | 60611 | United States |
| Johns Hopkins University | Baltimore | Maryland | 21205 | United States |
| Massachusetts General Hospital | Boston | Massachusetts | 02114 | United States |
| Washington University School of Medicine | St Louis | Missouri | 63110 | United States |
| Ohio State University Wexner Medical Center | Columbus | Ohio | 43221 | United States |
| Texas Neurology | Dallas | Texas | 75214 | United States |
| ID | Term |
|---|---|
| D000690 | Amyotrophic Lateral Sclerosis |
| D016472 | Motor Neuron Disease |
| D009134 | Muscular Atrophy, Spinal |
| C538253 | Amyotrophy, monomelic |
| D018450 | Disease Progression |
| ID | Term |
|---|---|
| D013118 | Spinal Cord Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D019636 | Neurodegenerative Diseases |
| D057177 | TDP-43 Proteinopathies |
| D009468 | Neuromuscular Diseases |
| D057165 | Proteostasis Deficiencies |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
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