D³b Driving Lifespan Discoveries in Down Syndrome Research
At the Center for Data-Driven Discovery in Biomedicine (D³b), data is the key to unlocking transformative advancements in healthcare. That’s why a landmark initiative focused on the Down syndrome community, where collaborative research and robust data analysis are converging to reshape our understanding of lifespan health, is garnering so much excitement.
The Down Syndrome Research Group at Children’s Hospital of Philadelphia (CHOP) is embarking on this initiative, fueled by over $2 million in National Institute of Health (NIH) funding, enlisting data resources of the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Data Coordinating Center (INCLUDE DCC), created and managed by D³b. This initiative aligns with the D³b mission to transform data into impact, empowering convergent research and accelerating translational research to improve patient outcomes, particularly in childhood cancers and rare diseases. The study leverages leading-edge data analysis to explore the intricate interplay of co-occurring conditions, social determinants of health, and the impact of ableism on individuals with Down syndrome.
D³b Starts a Data-Driven Reimagining
This project is a prime example of how the D³b infrastructure and expertise facilitate groundbreaking research. Medical data generated from this study will become a crucial asset, stored within and made accessible through INCLUDE DCC. This centralized, interactive data resource will empower researchers and clinicians to:
Uncover Hidden Patterns. By integrating diverse data streams—medical records, blood samples, endocrine, nutritional, sleep, and cognitive evaluations—the analytical tools developed by D³b enable scientists in the Down Syndrome Research Group to identify previously unseen relationships and patterns, thereby better managing co-occurring conditions. While, as a research center, D3b doesn’t treat conditions such as Down Syndrome or Alzheimer’s Disease, its ecosystem enables discoveries that lead to improved quality of life for patients.
Advance Personalized Medicine. With a comprehensive lifespan dataset, this collaboration aims to develop tailored interventions that address the unique needs of individuals with Down syndrome.
Bridge the Research and Practice Gap. The new Down syndrome project at CHOP has the potential to facilitate the translation of research findings into actionable clinical insights, enabling general pediatricians and specialists to make informed decisions.
A Community-Centric Approach to Data Collection
This initiative is not confined to a single institution. Project researchers are collaborating with experts across the country to ensure that data collected reflects diverse representation and maximizes impact.
Additionally, project partners understand that the success of the data collection initiative for this project depends on a strong partnership with the Down syndrome community. CHOP researchers have developed inclusive practices from accessible consent forms and websites informed by a community advisory panel, to gathering lived experiences through interviews and surveys to address ethical concerns and ableism. Tools like storyboards and behavioral supports help reduce anxiety, and community input has already led to at-home sleep studies that ease participation.
Data-Driven Discoveries for a Brighter Future
This NIH-funded study, the largest of its kind, promises to generate a wealth of data that will transform our understanding of Down syndrome. By harnessing the power of the D³b data infrastructure and fostering close collaboration with the community, this innovative team is poised to unlock groundbreaking discoveries that enhance the health and well-being of individuals with Down syndrome throughout their lifespan.
Director of Data Technology and Innovation at D3b, Dr. Allison Heath, explains, “We don’t have answers to many questions. We have hypotheses, but looking at these data over the lifespan is groundbreaking.” D3b is committed to making those groundbreaking discoveries a reality.