The research team created and determined the comparative effectiveness of a virtual clinic, including a tool that collects health history and current symptoms, creates personalized checklists for caregivers, generates reports of recommended services that caregivers can share with their primary care providers, and provides links to updated and accurate information on numerous Down syndrome topics.
ABC News’ flagship morning program Good Morning America recently featured an online story on care for people with Down syndrome that highlighted a PCORI-funded project.
The story about 28-year-old Cristina Sanchez, who lives with Down syndrome, featured Down Syndrome Clinic to You, a web-based platform for caregivers that helps people with Down syndrome get recommended health services by bringing the expertise of Down syndrome specialists to patients who don’t otherwise have access to specialty care. Sanchez was one of the first patients enrolled in the project.
Brian Skotko, MD, MPP, the study’s principal investigator, worked with parents and caregivers of people with Down syndrome, representatives of Down syndrome advocacy organizations, primary care physicians, and national medical experts on the project.