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This study outlines structured Clinical Evaluator (CE) testing techniques that are proposed to be implemented across all sites participating in the Cooperative International Neuromuscular Research Group (CINRG) research studies. The study will determine if the selected techniques are reliable and reproducible across the CINRG network by evaluating the reliability and reproducibility of the measures between CEs
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Dystrophinopathies | |||
| Gold Standard Clinical Evaluators (GS-CEs) | |||
| Sites Clinical Evaluators (CEs) |
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| Measure | Description | Time Frame |
|---|---|---|
| Clinical Evaluator Assessments | The following assessments are conducted by certified physical therapists: Anthropometrics, goniometry, Brooke upper extremity and Vignos lower extremity scales, Performance Upper Limb Scale (PULS), North Star Ambulatory Assessment (NSAA), Six Minute Walk Test (6MWT), time to rise from floor, time to stand from a chair, time to climb four stairs, time to walk/run 10 meters, 9 Hole Peg Test (9HPT), Quantitative Muscle Tests (QMT), Manual Muscle testing (MMT), Force Vital Capacity (FVC), Force Expiratory Volume (FEV1), Maximum Inspiratory Pressure (MIP), Maximum Expiratory Pressure (MEP), Peak Expiratory Flow Rate (PEFR) and Peak Cough Flow (PCF). The reliability of these commonly used measurements is fundamental to clinical research, our ability to have confidence in the data we collect and our ability to draw rational conclusions from the data. | One time visit |
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Dystrophinopathy Participant Inclusion Criteria:
Dystrophinopathy Participant Exclusion Criteria:
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Dystrophinopathies (Duchenne Muscular Dystrophy and Becker Muscular Dystrophy)
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| Name | Affiliation | Role |
|---|---|---|
| Lauren Morgenroth, MS, CGC | Children's National Research Institute | Principal Investigator |
| Tina Duong, MPT | Stanford University | Principal Investigator |
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