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Direct linkMelissa 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
Jacinta M. Saldaris; Jeremiah Ayalde; Samali Kankanange; Jessica Keeley; Helen Leonard; Peter Jacoby; Eric D. Marsh; Tim A. Benke; Scott T. Demarest; Jenny Downs – International Journal of Language & Communication Disorders, 2024
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…
Descriptors: Language Impairments, Communication Disorders, Neurodevelopmental Disorders, Evaluation Methods
