Article

“They don’t know how to live with a child with these conditions, they can’t understand…”: The lived experiences of parenting a child with a genetic neurodevelopmental disorder

2024-07-24

Abstract excerpt

<h4>Background</h4> A genetic neurodevelopmental diagnosis (GND) impacts all aspects of a child and family’s life. GNDs are rare; most have limited natural history data. We aimed to understand parents’ experiences around data acquisition about their child’s GNDs which can help inform clinical practice. <h4>Design and participants</h4> This analysis is part of the UK multicentre GenROC study. We conducted 17 semi-s...

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Literature Corpus work: c8d72e71-b316-5d22-bf4d-15858376907b
DOI: 10.1101/2024.07.24.24310802

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