Metrics That Move Research
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8,500+Families represented via DS-Connect® contributions
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1.2MRecords harmonized across platforms
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650+Registered researchers & clinicians
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95Institutions collaborating worldwide
How can individuals with Down syndrome support the INCLUDE DCC?
The best way for a person with Down syndrome to support the INCLUDE DCC is to participate in research. Researchers, clinicians and participants must work together to understand the causes of medical conditions more commonly experienced by people with Down syndrome. Participating in research is what helps scientists understand the causes of co-occurring conditions and figure out the best treatments. When enough people participate in these studies and enough data is acquired, we can learn more with the goal of improving health and the quality of life for all people with Down syndrome. You can view a list of clinical studies that currently need participants with Down syndrome. All featured studies have been reviewed and approved by an Institutional Review Board, The DS-Connect Research Review Committee and meet all of the criteria for informing eligible participants to take part in a study.
What is DS Connect, and how does it support research through the INCLUDE Program?
DS-Connect®: The Down syndrome registry is an online survey tool designed to collect demographic data and basic health information from individuals with Down syndrome (DS). The purposes of DS-Connect® are:To identify the various phenotypic manifestations of DS.
To identify individuals with DS who may be eligible for research studies or new clinical trials, based on specific information about their diagnosis and health history.
If you’d like to learn more about how to register with DS-Connect®, read the registry’s Frequently Asked Questions.
How can I or my organization partner with the INCLUDE DCC to support the research?
INCLUDE DCC Partners are nationally known organizations and individuals committed to supporting the mission and work of the INCLUDE DCC. They are advocates, nonprofits and other groups working in Down syndrome research, support, healthcare and more. If you would like to learn more about how you or your organization can become a partner in research at the INCLUDE DCC, reach out to our team by emailing us at info@includedcc.org.