Publications by authors named "Kinel S"

Background: Direct-to-participant online reporting facilitates the conduct of clinical research by increasing access and clinically meaningful patient engagement.

Objective: We assessed feasibility of online data collection from adults with diagnosed Huntington's disease (HD) who directly reported their problems and impact in their own words.

Methods: Data were collected online from consenting United States residents who self-identified as 1) having been diagnosed with Huntington's disease, 2) able to ambulate independently, and 3) self-sufficient for most daily needs.

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Article Synopsis
  • The study examines the quality of care for individuals affected by Huntington's disease (HD) in the U.S., identifying gaps and experiences based on surveys from both patients and caregivers.
  • Out of 797 valid responses, many reported a good level of care, particularly from HD specialists, but about 20% indicated that they were not receiving necessary medical or community support.
  • There's a strong demand for better resources, financial planning support, and increased education about HD in the healthcare community, highlighting the need for organizations to improve care access and patient outcomes.
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Importance: Deutetrabenazine is a novel molecule containing deuterium, which attenuates CYP2D6 metabolism and increases active metabolite half-lives and may therefore lead to stable systemic exposure while preserving key pharmacological activity.

Objective: To evaluate efficacy and safety of deutetrabenazine treatment to control chorea associated with Huntington disease.

Design, Setting, And Participants: Ninety ambulatory adults diagnosed with manifest Huntington disease and a baseline total maximal chorea score of 8 or higher (range, 0-28; lower score indicates less chorea) were enrolled from August 2013 to August 2014 and randomized to receive deutetrabenazine (n = 45) or placebo (n = 45) in a double-blind fashion at 34 Huntington Study Group sites.

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The electroretinogram (ERG) and electrooculogram (EOG) are electrophysiological tests employed in ophthalmology to diagnose degeneration or injury to the outer half of the retina, including the rods and cones of the visual system. This pilot study was undertaken to determine if sleep deprivation of more than 24 h in rated flying personnel may show an abnormality in retinal function as measured by the ERG and/or EOG. This may give insight to the visual function in flying personnel on deployment or other long missions where uninterrupted sleep may be a problem.

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