DSR Episode #25: DS Connect with Lisa Kaeser

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:

Oh and while you are in a good mood, go to iTunes and look us up.  Click subscribe and give us a good review.
Thanks,
Mark
Download Down Syndrome Radio, Episode #25.
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NIH launches first national Down syndrome registry

from the NIH:
The National Institutes of Health has launched DS-Connect, a Web-based health registry that will serve as a national health resource for people with Down syndrome and their families, researchers, and health care providers.
“The Down syndrome community has voiced a strong need for a centralized, secure database to store and share health information. DS-Connect fills that need, and helps link individuals with Down syndrome to the doctors and scientists working to improve their health and quality of life,” said Yvonne T. Maddox, deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which funded and developed the registry.
Participation in the registry is free and voluntary. Individuals with Down syndrome, or family members, on their behalf, may sign up to create personalized profiles with information about their health histories, including symptoms, diagnoses, and medical visits. The website has been designed to ensure that all information remains confidential. The site will separate users’ names from their health information, so that individuals may compare their health information with that of all other participants in an anonymous manner.