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Monday, October 13, 2014

DS Connect: Have You Connected?

If you are the parent or legal guardian of, or an adult person with Down syndrome, have you signed up with DS Connect yet?

What is DS Connect? It is a national registry for individuals with Down syndrome and their families funded by the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development. The registry will connect volunteer families with researchers, clinicians and other professionals for research studies.

The need for the registry was explained in two Down syndrome consortium meetings about 4 years ago.

This need for contact registries for DS has been underscored by the concerns of participants in two recent meetings, a Down Syndrome Registry Meeting sponsored by the National Down Syndrome Society in September, 2010, and Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks, sponsored jointly by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and the Global Down Syndrome Foundation in December, 2010.  The NICHD recognizes that the DS advocacy community has already made significant strides towards the creation of a contact registry relevant to engaging DS individuals and their families in basic, clinical, and translational research.  However, significant issues remain with regard to research databases and biospecimens repositories.  With regard to research databases, the NICHD recognizes several goals for these resources.

Many other medical conditions have registries, until now there hasn't been one for Down syndrome. There was a time when research on Down syndrome wasn't important; yet society has come to realize it is important. It is important to discover how and why that extra chromosome affects an individual. Up to date and accurate information can only help further research which in turn helps in understanding Down syndrome.

This is not about finding a cure for Down syndrome - that extra chromosome happens at conception - but about a registry that can help advance research discoveries, develop treatments and improve the quality of life for people living with Down syndrome.

The registry is what each family makes of it. You register with your own user name and password on the secure site and you control what and how much information you want to include. You don't have to do it all at once, you can register and log back in at a later time to input medical information.

Researchers can then access de-indentified aggregate data to identify target populations for study or trial planning/recruitment. Families can explore the data that has been entered to learn more about Down syndrome and how other families have been impacted.

I know there are many questions out there about the registry, who is maintaining it, how it will be used, who has access etc ... here is the link to the FAQ page where most of the questions are answered.

The goal is to have 10,000 individuals registered and the registry is currently at 2356.

Founders of The LuMind Foundation have put out a challenge to help spread the word about the registry and increase registration. Throughout the month of Oct for each new registrant the founders will donate $100 to LuMind. For every registrant over 125 the amount will be doubled.

Since the beginning of Oct there have already been 74 new people registered. If you're not yet registered will you take the challenge and register? No cost to register and you help increase research funding to LuMind Foundation at no cost to you.

If you are registered will you help spread the news about the registry, and the challenge?

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