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Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches: Lessons from the SPARK Autism Study
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Connie Anderson; Alan Iampieri; Leah Franklin; Amy Daniels; Katharine Diehl; J. Kiely Law – Journal of Autism and Developmental Disorders, 2024
To explore issues surrounding re-consenting youth in longitudinal studies as they reach legal adulthood interviews were conducted with 46 parents plus 13 autistic teens enrolled in the Simons Foundation Powering Autism Research for Knowledge (SPARK) study. Qualitative analysis focused on family sensitivities regarding guardianship decisions,…
Descriptors: Informed Consent, Pediatrics, Research Methodology, Autism Spectrum Disorders