A Qualitative Analysis of Family Caregiver Experiences Accessing Treatment for Self-Injurious Behavior in Individuals with Intellectual and Developmental Disabilities.

Introduction: There is evidence of a gap between individuals with intellectual and developmental disabilities (IDD) who need treatment for self-injurious behavior (SIB) and those who receive treatment. The purpose of this study (=15) was to begin to understand the treatment gap from the perspective of family caregivers.

Methods: In semi-structured virtual interviews, family caregivers discussed their experiences of working with providers to treat their child's or sibling's self-injury.

Challenges in Using Parent-Reported Bed and Wake Times for Actigraphy Scoring in Rett-Related Syndromes.

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.

International workshop: what is needed to ensure outcome measures for Rett syndrome are fit-for-purpose for clinical trials? June 7, 2023, Nashville, USA.

Introduction: The clinical, research and advocacy communities for Rett syndrome are striving to achieve clinical trial readiness, including having fit-for-purpose clinical outcome assessments. This study aimed to (1) describe psychometric properties of clinical outcome assessment for Rett syndrome and (2) identify what is needed to ensure that fit-for-purpose clinical outcome assessments are available for clinical trials.

Methods: Clinical outcome assessments for the top 10 priority domains identified in the Voice of the Patient Report for Rett syndrome were compiled and available psychometric data were extracted.

Travis I. Thompson (1937-2023).

Travis I. Thompson was born on July 20, 1937, in Minneapolis to William and Loretta Thompson. Travis completed his BA (1958), MA (1961), and PhD (1961) degrees all at the University of Minnesota in Psychology, with postdoctoral work at the University of Maryland with Joseph V.