Partners: Sunny Juul, Kari Stephens, Josh Lovseth, and Grace Sun
SSEC Engineers: Robert Culver and Anshul Tambay
Research Goals and Domain
One in six children have an intellectual and/or developmental disability (IDD). Despite this high prevalence, there are critical gaps in knowledge on how and when children present with potential IDD. Furthermore, there is incomplete information about how pre- and post-natal environmental exposures and other social determinants of health affect diagnosis, treatment, and outcomes. This lack of data is detrimental and leads to or magnifies health disparities.
Software Problem
To address these shortcomings, clinicians would like to track patterns in patient pathologies and outcomes, informing future appointments and care plans. Learning what tests are best utilized in evaluation and at what ages, which services and therapies they are referred to, which interventions are most effective, and developmental outcomes for specific conditions over time.
Software Solution
SSEC is collaborating with researchers from The Institute on Human Development and Disability (IHDD) and the University of Washington School of Medicine to develop a data visualization platform against a database for children referred for developmental delay using existing data from UW Medicine Clinics. These data visualizations will provide a view into de-identified data to create optimized diagnostic, treatment and prognostic pathways for children with IDD. This will streamline filtering and sorting across a range of patient demographics and outcomes, supporting distillation of unique insights. The IDD Portal will combine data from across IHDD clinics, allowing researchers, administrators and clinicians to learn from a diverse range of patients.
Impact
Moving forward, SSEC and IHDD hope to expand the platform beyond UW to include and furnish the needs of the nationwide network of Intellectual and Developmental Disabilities Research Centers. More updates on this project will be shared soon.