The new DS Registry will provide huge opportunities to improve the lives of our children! We had the opportunity to speak with Lisa Kaeser about DS Connect which launched in September. Just listen to the list of potential benefits that will come out of this important new registry:
- Help connect people with DS to scientists who study DS.
- Speed up research in DS by collecting information that scientists can use.
- Help scientists learn why people with DS have different symptoms.
- Help health care professionals improve how they treat people with DS.
- Advance understanding about how and why certain treatments work and don’t work.
- Help scientists develop and test new treatments for people with DS
Get excited people! These are serious benefits for our loved ones! Signing up only takes a few minutes – both Rick and I did it. Also, you get access to awesome demographic data on children with DS.
Lisa Kaeser is the Director of Legislation and Public Policy for the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Lisa was a wonderful guest and told us ALL about it. We went over the history of the effort and the development of the registry as well as the types of data it will contain. The uses relate directly to the goals listed above.
One really big issue was privacy. This is important to many folks so we went through this thoroughly. The contact data is kept completely separate from the actual data. Researchers can see the registry contents by category, but can never find out information about a specific individual. Registrants can ‘opt in’ to be contacted under specific circumstances such as a medical discovery or to potentially be part of a research trial. Rick and I both filled it out and I for one thought it felt really safe.
Go and register – it is quick and easy, we promise:
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Thanks,
Mark
Download Down Syndrome Radio, Episode #25.
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