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Assessment Of Stakeholder Engagement In A Down Syndrome Research Study, Jeanhee Chung, Ashwini Sarathy, Yichuan Grace Hsieh, Greg Estey, Amy Torres, Vasiliki Patsiogiannis, Karen Donelan, Brian G. Skotko

Journal of Patient-Centered Research and Reviews

There is growing recognition of the importance of engaging patients early in the design of research studies. For studies involving patients with intellectual and cognitive disabilities, researchers may consider engaging with family caregivers, health professionals, community advocates, and/or subject matter experts to provide a more multifaceted, surrogate perspective. Evaluating the engagement of these stakeholder groups in research is nascent, and tools are limited. Research studies involving these individuals provide the opportunity to test new methods of measurement of stakeholder engagement in research. We conducted a 3-year research study implementing and evaluating Down Syndrome Clinic to You, an online platform for …