DS-Connect: The Down Syndrome Registry was developed to facilitate information-sharing and research participation among people with Down syndrome, their families, and investigators. It was launched by the National Institutes of Health (NIH) in 2013, over 10 years ago. It is now undergoing a major update with improved features.
Here is a brief history of the history of the registry:
2006
The Director of the NIH asks the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) to lead the formation of a Down Syndrome Working Group (DSWG) to include scientists from across the NIH and coordinate research supported by the NIH related to Down syndrome.
2007
The DSWG, with input from scientists, family communities and at the request of Congress, creates the NIH Research Plan on Down Syndrome. Its goal is to understand many of the co-occurring conditions that impact the lives, health and well-being of people with Down syndrome Down syndrome. One of its recommendations is to create a National Registry for people with Down syndrome.
2011
The NIH creates the Down Syndrome Consortium to foster communication and idea-sharing among NIH, individuals with Down syndrome and their families, national organizations interested in Down syndrome, and pediatric and other groups. One of its first activities is to create a Down syndrome registry, now called DS-Connect®: The Down Syndrome Registry.
2013
The DS-Connect Registry is launched.
2014
The DS-Connect Registry Professional Portal is launched to allow investigators to request recruitment assistance from the registry for their research projects. An updated NIH Research Plan on Down syndrome is published.
2015
The Spanish version of the website is launched.
2018
The NIH-wide INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE (INCLUDE) Project is launched under a Congressional directive to better understand co-occurring conditions that impact those with Down syndrome, as well as in the general population.
2022
The latest version of the NIH INCLUDE Down Syndrome Research Plan is published.
2023
The NIH announces that the DS-Connect Registry has supported recruitment for over 100 projects.
February 2024
The DS-Connect Registry pauses operations for a refresh and new platform.
June 2024
The NIH selects the University of Colorado after a competitive process to re-create, update, and host the next iteration of the Registry.
January 2025
The new, improved DS-Connect Registry is launched.
As of the end of September 2024, the INCLUDE Project had supported 362 awards, 15 clinical trials, and published over 450 scientific articles—all made possible because of you! This milestone would not have been possible without the hard work of many researchers, NIH staff, and especially, families and individuals with Down syndrome who agreed to share their health information and participate in research to advance our knowledge. Be a part of the future of Down syndrome research—join DS-Connect!
If you have questions about the registry, please contact us at: info@ds-connect.org.