NotesFAQContact Us
Collection
Advanced
Search Tips
Showing all 5 results Save | Export
Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals with Angelman Syndrome
Peer reviewed Peer reviewed
Direct linkDirect link
Zigler, Christina K.; Lin, Li; McFatrich, Molly; Lucas, Nicole; Gordon, Kelly L.; Jones, Harrison N.; Berent, Allyson; Panagoulias, Jennifer; Evans, Paula; Reeve, Bryce B. – American Journal on Intellectual and Developmental Disabilities, 2023
There is a critical need for high-quality clinical outcome assessments to capture the important aspects of communication ability of individuals with Angelman syndrome (AS). To center the perspective of caregivers, our team developed the novel Observer-Reported Communication Ability (ORCA) measure using best practice guidelines, with the goal of…
Descriptors: Genetic Disorders, Test Validity, Observation, Communication Skills
Validating and Applying the CSBS-ITC in Neurogenetic Syndromes
Peer reviewed Peer reviewed
Direct linkDirect link
Hamrick, Lisa R.; Tonnsen, Bridgette L. – American Journal on Intellectual and Developmental Disabilities, 2019
Although social communication skills are commonly delayed in children with neurogenetic syndromes (NGS), skill profiles in very young children are largely under characterized, in part due to the lack of validated assessment measures appropriate for these populations. We addressed this gap by validating and applying a popular early social…
Descriptors: Rating Scales, Genetic Disorders, Test Validity, Interpersonal Communication
Examination of the ADOS-2 Expressive Language Score in Fragile X Syndrome
Peer reviewed Peer reviewed
Direct linkDirect link
Fielding-Gebhardt, Heather; Bredin-Oja, Shelley L.; Warren, Steven F. – American Journal on Intellectual and Developmental Disabilities, 2021
The development of an expressive language score for people with autism based on the ADOS-2 was recently reported by Mazurek et al. (2019). The current study examined the construct validity of the ADOS-2 expressive language score (ELS) in a sample of adolescents with fragile X syndrome (n = 45, 10 girls), a neurodevelopmental disorder with high…
Descriptors: Autism, Pervasive Developmental Disorders, Expressive Language, Genetic Disorders
A Psychometric Evaluation of the Motor-Behavioral Assessment Scale for Use as an Outcome Measure in Rett Syndrome Clinical Trials
Peer reviewed Peer reviewed
Direct linkDirect link
Raspa, Melissa; Bann, Carla M.; Gwaltney, Angela; Benke, Timothy A.; Fu, Cary; Glaze, Daniel G.; Haas, Richard; Heydemann, Peter; Jones, Mary; Kaufmann, Walter E.; Lieberman, David; Marsh, Eric; Peters, Sarika; Ryther, Robin; Standridge, Shannon; Skinner, Steven A.; Percy, Alan K.; Neul, Jeffrey L. – American Journal on Intellectual and Developmental Disabilities, 2020
Rett syndrome (RTT) is a neurodevelopmental disorder that primarily affects females. Recent work indicates the potential for disease modifying therapies. However, there remains a need to develop outcome measures for use in clinical trials. Using data from a natural history study (n = 1,075), we examined the factor structure, internal consistency,…
Descriptors: Genetic Disorders, Psychometrics, Psychomotor Skills, Physical Disabilities
Feasibility, Reproducibility, and Clinical Validity of the Pediatric Anxiety Rating Scale--Revised for Fragile X Syndrome
Peer reviewed Peer reviewed
Direct linkDirect link
Russo-Ponsaran, Nicole M.; Yesensky, Jessica; Hessl, David; Berry-Kravis Elizabeth – American Journal on Intellectual and Developmental Disabilities, 2014
Fragile X syndrome (FXS) is the most common inherited cause of intellectual disability and the most common known genetic cause of autism. FXS is associated with psychiatric impairments, including anxiety disorders. There is a paucity of well-developed measures to characterize anxiety in FXS. However, such scales are needed to measure therapeutic…
Descriptors: Genetic Disorders, Children, Anxiety, Anxiety Disorders