Partners

Sunny Juul, Director, Cultivate Learning

Kari Stephens, Associate Professor, UW Medicine

Josh Lovseth, Data Services Manager, UW Medicine

Grace Sun, UW Medicine

SSEC Engineers

Robert Culver, Principal Software Consultant

Anshul Tambay, Technical Program Manager

One in 6 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, 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. 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. 

The Institute on Human Development and Disability (IHDD), located at the University of Washington (UW) in Seattle, Washington includes two nationally funded programs, the Intellectual and Developmental Disability Research Center (IDDRC) and the University Center for Excellence in Developmental Disabilities (UCEDD). SSEC is collaborating with researchers from IHDD and the University of Washington School of Medicine to develop a self-sustaining database for children referred for developmental delay using existing data from UW Medicine Clinics. Such a database provides de-identified data to create optimized diagnostic, treatment and prognostic pathways for children with IDD. 

Using PowerBI, clinicians will be able to track patterns in patient pathologies and outcomes, informing future appointments and care plans. This will streamline and make more accessible 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. 

Moving forward, SSEC and IHDD hope to expand the database beyond UW to include and furnish the needs of the nationwide network of Intellectual and Developmental Disabilities Research Centers (IDDRCs).