Tuesday, September 17, 2013

Down Syndrome Registry - Have You Signed Up Yet???

The Down syndrome world has been buzzing over the last few months since NIH announced their creation of a Down syndrome registry, escalating to a fever pitch in the last two weeks since the registry went live, allowing people to sign up and begin to enter data.  I have now signed up for Samantha, and have nearly completed the process - you can start it, then save it, and go back to either edit or complete.  This is a huge step in the right direction for making things happen, for getting the moving and shaking started, to help researchers find what they need, to do what they do, to help understand and, subsequently, improve the lives of people with Down syndrome.

Please read ONE21's statement below for more information and how the Registry is an important partner to the proposed Down syndrome biobank.. 

From ONE21's e-mail blast last week:

Last week, the National Institutes of Health (NIH) launched the first national Down syndrome registry as a resource for connecting researchers with families and self-advocates willing to participate in research and clinical trials. Called “DS-Connect,” the NIH Down syndrome registry will also help researchers improve our overall understanding of DS as a condition with the health histories, symptoms, and diagnosis information that families voluntarily provide.

For decades, DS researchers have lacked commonplace tools and capabilities necessary to advance their work to the next level, including a national DS registry. Without them, we can’t move from basic research to clinical trials to drug therapies or best practices that can meaningfully improve the quality of life for people with DS.

That is why the ONE21 Campaign fully supports DS-Connect, and encourages families to participate. DS-Connect is a positive step forward that complements the proposed biobank under ONE21.  In fact, both can work harmoniously to provide researchers a powerful portfolio of capabilities that will transform research and allow breakthrough discoveries not someday, but today.

For more information about DS-Connect, please go to: dsconnect.nih.gov.

For more information about ONE21, please go to: www.ONE21.org


Anonymous said...

I signed up and completed ethans information last week. Hoping this information will help lead to research on infantile spasms and down syndrome.


Rochelle said...

Thanks for reminding me. I had checked on it but it hadn't gone live yet a while ago. Will get on it!