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Direct linkConnie 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
Wheeler, Anne C.; Wylie, Amanda; Raspa, Melissa; Villagomez, Adrienne; Miller, Kylee; Edwards, Anne; DeRamus, Margaret; Appelbaum, Paul S.; Bailey, Donald B., Jr. – Journal of Autism and Developmental Disorders, 2020
Although informed consent is critical for all research, there is increased ethical responsibility as individuals with intellectual or developmental disabilities (IDD) become the focus of more clinical trials. This study examined decisional capacity for informed consent to clinical trials in individuals with fragile X syndrome (FXS). Participants…
Descriptors: Informed Consent, Genetic Disorders, Intellectual Disability, Decision Making
