The National Institutes of Health has awarded $1.4 million in first-year funding to the University of Colorado Denver to manage and improve DS-Connect®: The Down Syndrome Registry. Launched by NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) in 2013, DS-Connect® is an online registry that enables the Down syndrome community to connect with researchers, express interest in clinical studies, and complete surveys to improve understanding of their health, especially as they age.
Over the last decade, the registry has recorded important health data from nearly 6,000 people with Down syndrome. Data captured through DS-Connect® have informed the design of and recruitment for research studies, particularly those funded by NIH’s INCLUDE Project, which seeks to transform understanding of conditions that disproportionately affect the Down syndrome community.
In early 2024, the DS-Connect® website temporarily paused operations as NICHD made plans to migrate it to a new platform. With a two-year award from NIH, experts led by Joaquin Espinosa, Ph.D., at the University of Colorado’s Linda Crnic Institute for Down Syndrome will establish a new platform to support the DS-Connect® registry and begin the process of migrating existing data and registering new users. In the longer term, they will also spearhead improvements to the registry, such as enhancing its usability and promoting secure sharing of de-identified data with the research community. Funding is provided by NICHD and the INCLUDE project.
NICHD will continue to provide updates to registered participants and the Down syndrome community in preparation for the relaunch of the DS-Connect® website.
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