New supplemental funding from the Centers for Disease Control and Prevention (CDC) will enable the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (VKC TRIAD) to monitor and estimate prevalence of cerebral palsy (CP) in Middle Tennessee. This funding is part of a broader CDC Autism and Developmental Disabilities Monitoring Network (ADDM) grant, also being led by VKC TRIAD researchers.
Since 2015, VKC TRIAD has participated in CDC-led monitoring of autism prevalence. This supplemental funding will enable VKC TRIAD, in partnership with four other ADDM sites, to also estimate the prevalence of CP and related disorders. The work will happen in two stages. The first stage will help develop the strategies for CP identification, including common symptoms observed by partnering medical providers or identification of codes used in medical and educational records. The next stage will build on existing partnerships with the Tennessee Department of Education and internal Electronic Health Record experts STAR Core, through which researchers will be able to investigate how frequently characteristics of CP appear in records.
“This is an incredible opportunity to collaborate with experts in CP across the Vanderbilt University Medical Center,” said Amy Weitlauf, PhD, associate professor of Pediatrics and VKC TRIAD associate director of Research. “Integrating their knowledge with our expertise in big data sets and record abstraction to, for the first time, understand the prevalence of CP in our region is extremely exciting.”
According to the CDC, CP is “defined as a group of permanent disorders of the development of movement and posture that are attributed to non-progressive disturbances that occurred in the developing brain.” Cerebral palsy is an often misunderstood, overlooked and undercounted diagnosis that can have tremendous implications for not only children and families, but also educational and medical systems.
“Understanding its prevalence will, as we have done with autism, highlight the breadth and magnitude of its public health impact, providing crucial information to inform public health and advocacy efforts,” said Weitlauf. “Our ongoing autism monitoring work has established strong connections with the critical governmental, educational and medical entities in our region. We are excited to combine these existing connections and methods with the expert knowledge of our internal CP experts, including physicians and nurse practitioners from Developmental Medicine, Neurology, Orthopaedics and Physical Medicine and Rehabilitation. We are especially excited to study CP as an institution in a largely rural state, which consists of many medically underserved regions and populations of patients.”
Results of the study will represent the first formal count of CP prevalence in Middle Tennessee. This information will help people with CP and their families understand that they are not alone. It will provide families, as well as community stakeholder groups, with critical information to advocate for funding, support and recognition.
Additional Vanderbilt collaborators include Zachary Warren, PhD, Alison Vehorn, MS, Alice Lawrence, MD, and Margaret Adgent, PhD.