Neuropsychological assessment in rare pediatric neurogenetic disorders: considerations for cross-cultural clinical research

Veronica Bordes Edgar, Karen A. Dorsman, Daniel Horton, Souad Messahel, Beatriz MacDonald

Research output: Contribution to journalArticlepeer-review

Abstract

Neuropsychological assessment in rare neurodevelopmental disorders has provided clinicians and researchers with a more comprehensive view of natural history as well as opportunities for additional endpoints in treatment trials. While challenges to protocol development have been addressed in the literature, cultural considerations have been overly broad resulting in limited utility when including mixed international samples. Using experiences over the past five years with the development of ten different protocols for neurogenetic rare diseases, this paper presents further considerations for protocol development that are culturally sensitive to international samples. Recommendations are offered across areas including participants from multiple countries; cognitive, sensory and motor impairments; psychometrics; and assessment logistics. A neuropsychological assessment selection checklist that guides researchers and clinicians through considerations and a standard operating procedure that provides guidance on thinking through the assessment process are offered.

Original languageEnglish (US)
Pages (from-to)900-917
Number of pages18
JournalChild Neuropsychology
Volume30
Issue number6
DOIs
StatePublished - 2024

Keywords

  • Neuropsychology
  • assessment
  • cross-cultural
  • genetic disorders
  • rare disorders

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Neuropsychology and Physiological Psychology
  • Developmental and Educational Psychology

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