Rett syndrome is a severe neurodevelopmental disorder that affects about 1 in 10,000 females. Clinical trials of disease modifying therapies are on the rise, but there are few psychometrically sound caregiver-reported outcome measures available to assess treatment benefit. We report on a new caregiver-reported outcome measure, the Rett Caregiver…

Background: Communication impairments are a leading concern for parent caregivers of individuals with rare neurodevelopmental disorders (RNDDs). Clinical trials of disease modifying therapies require valid and responsive outcome measures that are relevant to individuals with RNDDs. Identifying and evaluating current psychometric properties for…

In this scoping review on 34 studies, we examined the use of immersive virtual reality (IVR) in neurodevelopmental disorders (NDD). IVR was mostly used in connection with autism spectrum disorder (ASD) for assessment of and intervention in social skills, and in attention deficit hyperactivity disorder (ADHD) for assessment of executive…

Sleep problems are common in Rett syndrome and other neurogenetic syndromes. Actigraphy is a cost-effective, objective method for measuring sleep. Current guidelines require caregiver-reported bed and wake times to facilitate actigraphy data scoring. The current study examined missingness and consistency of caregiver-reported bed and wake times…

Twice-exceptional individuals experience learning and psychosocial challenges resulting from the discrepancies between their cognitive and social-emotional development. This case report illustrates the learning and psychosocial faced by a child and an adolescent who possess both neurodevelopmental disorders and intellectual giftedness, and the…