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Showing results for "autism"
Research
Patient-advocate-led global coalition adapting fit-for-purpose outcomes measures to assure meaningful inclusion of DEEs in clinical trialsExisting clinical tools that measure non-seizure outcomes lack the range and granularity needed to capture skills in developmental and epileptic encephalopathy (DEE)-affected individuals who also fall in the severe to profound range of intellectual disability. This effectively excludes those with severe impairments from clinical trials, impeding the ability of sponsors to evaluate disease-modifying therapies.
Research
A Comparison of Inertial Measurement Units and Overnight Videography to Assess Sleep BiomechanicsThe assessment of sleep biomechanics (comprising movement and position during sleep) is of interest in a wide variety of clinical and research settings. However, there is no standard method by which sleep biomechanics are measured. This study aimed to (1) compare the intra- and inter-rater reliability of the current clinical standard, manually coded overnight videography, and (2) compare sleep position recorded using overnight videography to sleep position recorded using the XSENS DOT wearable sensor platform.
Research
Maternal emotion regulation and early childhood irritability: The mediating role of child directed emotion regulation strategiesParental assistance with children's emotion regulation (ER) is a form of emotion socialization behavior that has recently been operationalized with the development of the Parent Assistance with Child Emotion Regulation (PACER) questionnaire.
Research
Strengths and challenging behaviors in children and adolescents with Prader-Willi syndrome: Two sides to the coinPrader-Willi Syndrome (PWS) is a rare genetic disorder associated with emotional/behavioral disturbances. These difficulties are well documented in the literature, but the positive attributes of these individuals are not described.
Research
Low-dose oral interferon alpha as prophylaxis against viral respiratory illness: A double-blind, parallel controlled trialA double-blind, placebo-controlled clinical trial was conducted investigating the use of low-dose oral interferon alpha for preventing acute viral...
News & Events
Genetic analysis reveals range of Rett syndromeThe first comprehensive analysis of the clinical effects of genetic mutations involved in Rett syndrome
Research
Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorderValid clinical outcome assessments with the ability to capture meaningful aspects of neurodevelopment for individuals with neurogenetic conditions associated with profound functional impairments are lacking, yet critical for clinical care and clinical trial readiness.
Research
The feasibility of a digital health approach to facilitate remote dental screening among preschool children during COVID-19 and social restrictionsTele-dentistry can be useful to facilitate screening of children, especially those living in rural and remote communities, and during the COVID-19 pandemic. This study evaluated the feasibility of tele-dental screening for the identification of early childhood caries (ECC) in preschoolers using an app operated by their parents with remote review by oral-health therapists.
Research
A Family's Journey at JHC: Analyses of routinely collected dataDesiree Silva MBBS, FRACP, MPH, PhD Co-Head, ORIGINS Co-Head, The ORIGINS Project Professor Desiree Silva is Co-Director of ORIGINS and a Professor