Integrating Special Populations Trailblazer Awardees: Jacqueline R. Kitchen, M.D., Children’s Mercy Kansas City; Katie A. Waugh, Ph.D., University of Kansas Medical Center; Jeffrey D. Colvin, M.D., Children’s Mercy Kansas City.
By Frontiers , Clinical and Translational Science Institute
Dec 04, 2025
Project Title: Characterizing Autoimmune Conditions and Local Health Patterns in Down Syndrome to Guide Care and Research
People with Down syndrome experience a distinct pattern of health conditions, including a higher risk of some autoimmune diseases and early-onset Alzheimer’s disease. To meet these care needs, clinicians need data characterizing local health trends.
To fill that gap, Jacqueline Kitchen, M.D., Katie Waugh, Ph.D., and Jeffrey Colvin, M.D. are using their Integrating Special Populations Pilot Award (ISP) to examine health patterns in individuals with Down syndrome in the Kansas City region. Then, they will compare local findings with national data to guide care and focus research efforts.
Working across Children’s Mercy and KU Medical Center, the team will first look at patients with Down syndrome they see in Kansas City and note which health issues are most common among children and adults. They will also look at factors people can change, such as weight, and see how patterns differ by place and circumstance, including rural vs. urban and economic factors. The collaboration pairs Waugh’s basic-science work on immune dysregulation in Down syndrome with Kitchen’s and Colvin’s clinical and health-services perspective, aligning lab questions with day-to-day care needs.
This project also includes collaboration with community partners, like Down Syndrome Innovations, a local nonprofit that supports people with Down syndrome and their families, who joined the early research-interest calls and often helps share results back to families in plain language. The Community Advisory Board of KU Medical Center also reviews early findings and helps set priorities from a patient and caregiver point of view. Waugh’s lab also includes a Research Technician who is a self-advocate with Down syndrome and whose input helps the team create and refine their research questions.
With the support of their ISP Pilot Award, the team will build a Kansas City dataset across both institutions, describe autoimmune and related conditions at a local context, and prepare the local-to-national comparison for future multi-site work. The short-term goal is a clearer picture of Kansas City’s Down syndrome population: what health issues are most common here, how they can vary by place or circumstance, and where the biggest unanswered questions sit. From these subsequent studies, they will be able to target what matters most at the local level.
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