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Ashwin Karnik; Gurjot Malhi; Theodore Ho; Stacy Riffle; Kylie Keller; Soo-Jeong Kim – Journal of Autism and Developmental Disorders, 2025
Purpose: Access to research programs and increased diversity in research enrollment may be key to improving diverse populations' health and healthcare outcomes. To facilitate research recruitment, a Research Registry ("Registry"), a pre-recruitment database, was developed at an urban tertiary Autism Center ("Autism Center"). In…
Descriptors: Autism Spectrum Disorders, Patients, Enrollment, Informed Consent
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