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Melissa Raspa; Angela Gwaltney; Carla Bann; Jana von Hehn; Timothy A. Benke; Eric D. Marsh; Sarika U. Peters; Amitha Ananth; Alan K. Percy; Jeffrey L. Neul – Journal of Autism and Developmental Disorders, 2025
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…
Descriptors: Neurodevelopmental Disorders, Genetic Disorders, Females, Test Validity
Walton, Jennifer R.; Martens, Marilee A.; Moore-Clingenpeel, Melissa – Journal of Autism and Developmental Disorders, 2022
This study examined if listening to music will improve the accuracy of blood pressure (BP) readings in children with Williams syndrome (WS). Fifty-two participants (7-12 years) were randomly assigned to a music or non-music group. BPs were obtained at two time points. There was a significant decrease in both systolic and diastolic BP from Time 1…
Descriptors: Genetic Disorders, Children, Physiology, Music
Fisher, Marisa H.; Kammes, Rebecca R.; Black, Rhonda S.; Houck, Kristin; Cwiakala, Katie – Journal of Autism and Developmental Disorders, 2022
Adults with Williams syndrome (WS) display hypersocial behaviors and experience social skills deficits. To improve social outcomes, we evaluated the feasibility, acceptability, and preliminary efficacy of an 8-week distance-delivered social skills program for adults with WS. Sessions were offered twice a week for 90 min. Twenty-four adults with WS…
Descriptors: Distance Education, Interpersonal Competence, Social Development, Young Adults
Titlestad, Kristine Berg; Eldevik, Sigmund – Journal of Autism and Developmental Disorders, 2019
A growing evidence base supports early intensive behavioral intervention (EIBI) for young children with autism spectrum disorder. We have found only one study exploring the outcome of EIBI for children with Rett syndrome, which reported little effect. It suggested that future studies should employ more fine-grained outcome measures. We provided…
Descriptors: Behavior Modification, Early Intervention, Twins, Genetic Disorders
Monlux, Katerina D.; Pollard, Joy S.; Bujanda Rodriguez, Arlette Y.; Hall, Scott S. – Journal of Autism and Developmental Disorders, 2019
Telehealth is increasingly being employed to extend the reach of behavior analytic interventions to families of children with developmental disorders who exhibit problem behaviors. In this preliminary study, we examined whether function-based behavior analytic interventions could be delivered via telehealth over 12 weeks to decrease problem…
Descriptors: Males, Genetic Disorders, Behavior Problems, Behavior Modification
Dimitropoulos, Anastasia; Zyga, Olena; Russ, Sandra – Journal of Autism and Developmental Disorders, 2017
Here we report the feasibility and acceptability of telehealth for direct intervention in children with Prader-Willi syndrome (PWS). Children with PWS have social-cognitive challenges that are similar to children with ASD. However, developing behavioral interventions for individuals with PWS is faced with the significant challenge of enrolling…
Descriptors: Genetic Disorders, Intervention, Telecommunications, Behavior Problems