Attitudes of parents of children with rare neurological disorders towards clinical genetic testing.

Publication date: Jul 04, 2025

To study attitudes among parents of probands with rare pediatric-onset neurological and neurodevelopmental disorders on Clinical Genetic Testing (CGT). We administered an 8-item direct structured questionnaire comprising statements regarding attitudes on CGT to 101 consenting parents of probands enrolled in the University College London (UCL) Central Asia and Transcaucasia Disease Diversity Project. The probands comprised pediatric-onset diseases that included cerebral palsy, epilepsy, severe physical, language, and intellectual developmental delays, and autism spectrum symptoms in children with rare neurological disorders. We studied correlations between parents’ opinions and demographic and clinical characteristics. The majority of parents (82. 1-91. 9%) agreed on statements reflecting the positive effects of CGT (causal explanation, research support, treatment relevance, recurrence prevention, and family planning). The opinions on the negative effects (discrimination, parental concern, and family conflicts) were less uniform. A higher educational level of parents was negatively correlated with agreement on statements about causal explanation, research support, and family planning (p 

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