Session 6 - New Approaches
Novel Insights in Brain and Behavior Development in Down Syndrome from the Infant Brain Imaging Study (IBIS) Network
Presenters (jointly):
- Natasha Marrus, natasha@wustl.edu, Washington University in St Louis
- Martin Styner, styner@unc.edu, University of North Carolina
Authors:
Natasha Marrus3, Martin Styner1,2, Heather Hazlett1,2, for the IBIS Network
- Carolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill, NC
- Department of Psychiatry, University of North Carolina at Chapel Hill, NC
- Department of Psychiatry, Washington University in St. Louis, St. Louis, MO
Background: This abstract presents an introduction to the Infant Brain Imaging Study (IBIS) Network and will highlight some exciting new findings from their work on brain and behavior development in Down Syndrome (DS). IBIS is a collaborative multidisciplinary team from 5 US sites (Washington University, MO; University of North Carolina, NC; University of Washington, WA; Children’s Hospital of Philadelphia, PA; University of Minnesota, MN) with a well-established infrastructure for prospective developmental behavior and neuroimaging studies spanning infancy through adolescence.
Research question(s): To study and characterize trajectories of brain and cognitive development in children with DS from infancy to early adolescence.
Method: Assessments of brain development (structural, resting state functional, and diffusion MRI) and cognition/behavior (Bayley Scales of Infant and Toddler Development-4, Vineland Adaptive Behavior Scales-3) were acquired and analyzed in an infant sample longitudinally at 6, 12 and 24 months of age, as well as in a cross-sectional school-age sample (7-12 years of age).
Results: Findings include novel descriptions of behavioral trajectories in infants with DS, differing patterns of white matter microstructure in infancy versus school age in DS, and finally patterns of joint brain and behavioral morphology in school-aged children with DS. In addition, a new study of infants with DS (data collection to start in Fall 2025) will be described, which was recently funded through the INCLUDE mechanism to contribute to a multisite lifespan cohort of participants with DS.
Conclusion: Large-scale neuroimaging studies of infants and children with DS provide a valuable opportunity to characterize relationships between behavioral and brain development and to inform strategies for advancing assessment and intervention in Down syndrome.
Tracking development at home, in therapy and at school: introducing My Child’s Progress, My Clients’ Progress and My Students’ Progress
Frank Buckley, Angela Byrne, Sue Buckley, Down Syndrome Education International
frank.buckley@dseinternational.org
Understanding what a child knows and is yet to learn is a prerequisite for effective teaching. When children need additional support, interventions are likely to be most impactful when they are carefully targeted for each individual. We have previously described systems that we have developed to collect observations, to generate personalised advice and guidance, and to build datasets on many aspects of development^[1]^. We now present a series of apps that we are developing to make it easy and convenient for parents, therapists, and educators to record detailed information about children’s speech, language and literacy development. We will describe how these apps can be used to monitor children’s progress, provide data-driven, evidence-based advice, and to assist communication and collaboration between professionals and parents. We will also explore how – together with the underlying record-keeping, analysis and advice systems – these apps may offer new opportunities for research partners to access children’s records and to collect additional observations from families participating in studies. We will outline how we see these systems evolving through partnerships with families, researchers, and non-profit and statutory healthcare and education providers to better serve the global community of children with Down syndrome and other children with similar additional needs.
