Today, World Down Syndrome Day, marks the official launch of a new and improved version of DS-Connect®: The Down Syndrome Registry 
. Created by the National Institutes of Health in 2013, this online registry enables the Down syndrome community to connect with approved researchers, express interest in clinical studies, and complete surveys to improve the understanding of their health, especially as they age.
Since its inception, DS-Connect has recorded important health information from nearly 6,000 people with Down syndrome and supported recruitment for more than 100 research projects. Last year, DS-Connect temporarily paused operations as NIH made plans for a refresh, selecting the University of Colorado Denver as the registry’s new service provider.
The new registry website offers enhanced user-friendliness, modern navigation and visual design, and a responsive platform for access through different devices, among other improvements. Registry functions and resources, including a modern platform to complete health surveys and information related to Down syndrome care, are available in both English and Spanish.
“For more than a decade, DS-Connect has served as a central resource for families to share information with approved investigators to contribute to research on Down syndrome,” said Melissa Parisi, M.D., Ph.D., of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). “This new version of the registry will enhance the relationship between families and researchers, ensuring that the results of studies are available to families, and better address the health issues of people with Down syndrome.”
Additional improvements to DS-Connect include updated data visualization dashboards and periodic sharing of anonymized data with the INCLUDE Data Coordinating Center , a cloud-based platform to compile and disseminate Down syndrome research data from multiple studies. The new website also aims to make it easier for researchers to promote recruitment for their studies.
“Robust community engagement is essential as we work toward the goal of longer and healthier lives for people with Down syndrome,” said Joaquin Espinosa, Ph.D., executive director of the University of Colorado’s Linda Crnic Institute for Down Syndrome. “As we continue to improve DS-Connect, we plan to leverage the website as a platform to share research results and other news of interest with the community.”
Dr. Espinosa and Angela Rachubinski, Ph.D., also of the Crnic Institute, co-lead the team that manages DS-Connect and oversees improvements to the registry. Funding is provided by NICHD and NIH’s INCLUDE Project, which seeks to transform understanding of co-occurring conditions that disproportionately impact the Down syndrome community.
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