Miller, Victoria Allison PHD

Consent, assent, and decision-making are regularly encountered in the clinical and research settings but can be stymied in youth and adults with Down syndrome (DS) because of their intellectual disabilities, their receptive and expressive communication differences, and their providers' and potential research partners' limited expertise in the self-efficacy arena. This national patient-centered study seeks input from a diverse group of people with DS and caregivers on the use of multi-media materials to promote understanding/ appreciation of study purpose, procedures, risks/benefits and will be complemented by discussions surrounding decision-making involvement.

Consent, assent, and decision-making are regularly encountered in the clinical and research settings but can be stymied in youth and adults with Down syndrome (DS). This supplement will add 1) two sites (Miami and San Antonio) and 2) an investigator new to research in people with DS and from a background considered under- represented in research in its efforts to conduct a national patient-centered study of a diverse group of people with DS and caregivers on the use of multi-media materials to promote understanding/appreciation of study purpose, procedures, risks/benefits and decision-making involvement.