Cerebral palsy (CP) has been cited as one of the most common of all childhood disabilities, occurring in roughly 3 in 1,000 births recorded in the United States. While there is a great deal of research on CP in children, a different story emerges when we look at the depth of information on adults. Cristina Sarmiento, MD, assistant professor of physical medicine and rehabilitation at the University of Colorado Anschutz School of Medicine and investigator with the Adult and Child Center for Outcomes Research and Delivery Science (ACCORDS), aims to change that with her research.
“My area of clinical and research interest and passion is improving the lifespan care for individuals with CP. I particularly focus on the transition to adulthood and aging with CP,” she says. “Historically, those are the times of life that are less researched and less funded. As a result, we have much less evidence to guide our care in those periods.”
Sarmiento is embarking on research focusing on this understudied and underserved part of the CP population thanks to a new grant award from the National Institutes of Health.
Sarmiento plans to use the grant award to adapt an online health tool to help guide the care of adults with CP. Based on a similar online health tool developed for people with Down syndrome, Sarmiento’s tool will provide CP-informed care recommendations for people with CP and/or their caregivers.
Adults with CP are at high risk for things like declines in function, changes in their muscle tone, falls, pain, and mental health challenges. Sarmiento’s hope for this new tool is it will help bring CP-informed care to affected adults, even if they don’t have access to an institution that provides CP-specific care.
Based on responses from an initial questionnaire that patients will use, the tool will give a personalized list of recommendations and talking points geared towards CP’s unique health risks for the next primary care visit. The tool is intended to help guide the patient, the family, and the primary care provider in options for CP-informed care.
Sarmiento, a former Scholars in Clinical Outcomes Research (SCORE) fellow, credits ACCORDS with connecting her with researchers who introduced her to future mentors, cores that helped with her research project, and more. The SCORE fellowship trains promising scientists in clinical, translational, and health services research to obtain career development awards and launch independent research careers.
“Before the SCORE fellowship, I had participated in research projects, but I had not really driven my own research program. SCORE gave me such a strong foundation and excellent mentorship, including connecting me with the Qualitative and Mixed Methods Core within ACCORDS,” she says. “I connected with a [former] qualitative methodologist, Megan Morris, who helped me throughout the whole grant writing process, and my other mentors, Jamie Feinstein, Dan Matlock, and Katie Colborn – great researchers who have been so generous with their time and their expertise, helping me with the grant from day one.
“I cannot overstate how much of an impact those training and mentorship programs had on me, both through ACCORDS and Colorado Clinical and Translational Sciences Institute (CCTSI),” she adds. “I’m so thankful for all the mentorship and both the formal and informal training opportunities from those programs. It took a whole village.”