Awareness Resources

National Institute of Health (NIH) Resources

National Institute of Health (NIH) Down Syndrome Registry – DS Connect
Centralized data registry (online survey tool) where parents and caregivers can share information about their child to guide research.  Also allows families to potentially be matched with research studies that might benefit their loved ones with Down Syndrome.   Also includes access (via an application process) for professionals.

National Institutes of Health (NIH) Down Syndrome Consortium
NIH-led patient advocacy non-profit seeking to coordinate Down syndrome research.

National Institutes of Health (NIH) Down Syndrome Research Plan 2014
Downloadable PDF of U.S. federal Down syndrome research priorities.

Other Non-Profits Supporting Cognitive Research *

Global Down Syndrome Foundation
A summary of the research efforts of a leading global Down syndrome organization. Currently those efforts are all US-focused.

LeJeune Foundation
Leading international funder of cognitive research for Down syndrome. Named after Jerome LeJeune, M.D., the scientific discoverer of Trisomy 21 and global Down syndrome advocate.

LuMind Foundation
Leading U.S. funder of cognitive research for Down syndrome. Formerly known as Down Syndrome Research and Treatment Foundation (DSRTF).

Research Down Syndrome
Leading U.S. funder of cognitive research for Down syndrome. Recently merged with the LuMind Foundation.

Protocols and Clinical Studies *

Clinical Trials.Gov
Listing of all human clinical studies that may benefit people with Down syndrome.

Changing Minds Foundation
Pioneers of a protocol for cognitive enhancement in Down syndrome. The CMF protocol couples natural products with prescription medicines. While the protocol as a combined entity has not been tested, most of the individual components are scientifically supported. This is an informational site – CMF does not sell the products.

Down Syndrome Biomarker Initiative
Study looking at brain biomarkers depicting potential Alzheimer’s risk in people with Down syndrome.  Sponsored by the international pharmaceutical company Hoffman LaRoche.

* Note:  The 3-21 Foundation does not endorse any of these protocols or trials.  These links are provided for informational purposes only.  Decisions about involvement in a trial should always be made by the self-advocate and their family in consultation with their personal physician.

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