UC Davis researchers are leading a major $5.5 million study to better understand how children with Down syndrome develop expressive communication — the skills used to share what we want, think or feel.
Angela John Thurman, a professor in the Department of Psychiatry and Behavioral Sciences and the UC Davis MIND Institute, is leading the research. The five-year project is funded by a grant from the National Institutes of Health.
"Most children with Down syndrome have delays in developing expressive communication," Thurman explained. "We know these delays are common and that children develop at different speeds, but we still don't know enough about how their communication skills change and grow."
The researchers will collaborate on the project with colleagues at Colorado State University, Cincinnati Children's Hospital Medical Center, Massachusetts General Hospital and the University of Pennsylvania.
By combining these tools with rigorous research, we should be able to develop a more accurate and meaningful guide - like a roadmap specifically for children with Down syndrome." -Angela John Thurman, professor, Department of Psychiatry and Behavioral Sciences
Finding answers to questions families often ask
Children with Down syndrome are born with an extra copy of chromosome 21. This impacts how the body and brain develop. It is often associated with characteristics such as distinctive physical features, differences in learning, and, in some cases, health-related concerns such as heart problems. Down syndrome occurs in about 1 in 700 live births and is the leading genetic cause of intellectual disability.
Thurman and her team hope to answer questions that families often ask but professionals cannot yet answer — such as when a child with Down syndrome might reach certain milestones or how early signs can predict whether extra help is needed.
"Without this kind of information, parents and professionals don't have much to guide their decisions," Thurman said. "That often means waiting to see how things go or using a one-size-fits-all approach."
Combining familiar tools with rigorous research
Researchers will recruit 168 children with Down syndrome from 18 to 54 months of age to study expressive communication development. Expressive communication can include gestures, sounds, pictures, sign language or spoken words.
The team will use detailed, well-established methods to follow children's progress. These will include interviewing parents, tracking the words and skills children use over time and analyzing recordings of children communicating. The team will check in with families every three or four months, either in person or via telehealth, to closely monitor changes as they happen.
"We're using approaches that are familiar and useful to families and providers, like tracking developmental milestones and stages of language development," Thurman said. "By combining these tools with rigorous research, we should be able to develop a more accurate and meaningful guide — like a roadmap specifically for children with Down syndrome."
Understanding how these skills emerge and vary among children with Down syndrome could transform how families and providers plan interventions.
Currently, language interventions for people with Down syndrome vary widely, and research on their effectiveness is limited. Thurman noted that the guide would allow providers to shift attention toward customized support to fit each child's needs.
"Many programs are helpful, but a key challenge is that we still struggle to know exactly how to adjust these supports to best fit each person's unique needs," Thurman said. "As we learn more about the different ways people with Down syndrome learn and grow, professionals will be better able to create tools and supports that are more personalized and better timed."
The ultimate goal is to improve quality of life for children with Down syndrome by giving families and professionals the knowledge they need to support communication development in the most effective way possible. "By working closely with families, we can make sure research focuses on the questions and concerns that matter most to them," Thurman said.
