Kelly, Andrea Bridget MD
Children's Hospital of Philadelphia
INCLUDE Grants
Acceptability and Performance on In-Home Polysomnography in Youth with Down Syndrome
Kelly, Andrea BridgetTapia, Ignacio Esteban
Obstructive sleep apnea syndrome (OSAS) is common in children and adults with Down syndrome (DS). Because testing for OSAS can be inaccessible, expensive, and not well-tolerated, studying the impact of OSAS and its treatment upon learning, behavior, and heart disease risk is challenging. This study will explore how well the use of in-home testing for OSAS is tolerated by adolescents with DS and effective in diagnosing OSAS.
Leveraging E-education to Advance Assent and Decision-Making Involvement in Down Syndrome
Kelly, Andrea BridgetMiller, Victoria Allison
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.