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AT HOME

March 31, 2016

Research Summary

Only a small percentage of patients with ALS participate in clinical trials. A major reason is that trials are conducted in a limited number of academic medical centers, and that in-person visits are required on a frequent basis. At these visits, trial outcome measures are obtained, with trained evaluators performing these measures. Our study will test the hypothesis that ALS patients can perform clinically meaningful outcome assessments at home, thus obviating a major need to come to the study center. We will provide simple tools for assessment, train subjects via webinars, and patients will enter their data to an online portal. For a sample of participating patients, we will compare AT HOME measures with those obtained at regular study visits by trained evaluators. We will also assess the extent to which frequent sampling of measures can reduce the variability of measurement; we expect that such sampling will increase reliability of measurement and potentially reduce the sample size required to see meaningful changes in response to experimental therapies.

Investigators

  • Barrow Neurological Institute
    • Jeremy Shefner MD, PhD
  • Harvard Medical School
    • Seward Rutkove

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Advisory Board

  • Leandro P. Rizzuto
  • Peter N. Foss
  • Merit  Cudkowicz, MD
  • Denis  Rizzuto
  • Stanley H. Appel, MD
  • Robert  Brown, D.Phil., MD
  • Tom  Gentile
  • Clive  Svendsen, PhD
  • Richard  Ellenbogen, MD
  • Randy  Fishman
  • Edward J. Rapp
  • Sudha  Maniam