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Validating Community-Based Measures of Activity in Ambulatory Duchenne Muscular Dystrophy

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Technical Report,01 Sep 2018,31 Aug 2019

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University of California, Davis Sacramento United States

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This research project will validate use of patient generated step and activity data for data collection at the point-of-care to support use of stride rate patterns as an outcome measure for ambulatory patients with DMD. We will include step activity monitoring by laboratory and consumer level step monitoring devices that can feed data through Apple HealthKit into the UC Davis instance of the Epic electronic medical record system. Up to 60 ambulatory patients with DMD will be recruited to represent the early, middle and late stages of the progressive loss of ambulation in DMD. Up to 150 control patients will be recruited and split into similar age ranges. Participants will be assessed using step monitoring devices and traditionally performed clinical outcome measures, followed by community monitoring. StepWatchTM data collected from two previously enrolled cohorts of children with DMD will also be used for longitudinal analyses and determination of responsiveness to steroid treatment.

Subject Categories:

  • Personnel Management and Labor Relations
  • Medicine and Medical Research

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