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Digital endpoints for self-administered home-based functional assessment in pediatric Friedreich's ataxia.

Arne MuellerElaine PatersonAvery McIntoshJens PraestgaardMary ByloHolger Alfons HoeflingMcKenzie WellsDavid R LynchChristian RummeyMichelle L KrishnanMeredith SchultzC J Malanga
Published in: Annals of clinical and translational neurology (2021)
Deploying digital endpoints in home settings is feasible in this population, results in meaningful and robust data collection, and may allow for frequent sampling over longer periods of time to track disease progression. Care must be taken when training participants, and investigators should consider the complexity of the tasks and equipment used.
Keyphrases
  • healthcare
  • palliative care
  • working memory
  • electronic health record
  • quality improvement
  • big data
  • early onset
  • affordable care act
  • machine learning
  • artificial intelligence
  • chronic pain