It's Your Turn To Talk About It

Tue, September 17, 2013 10:26 AM | Anonymous member (Administrator)

We’ve been talking about for over a week – and now we’re seeing lots of parents talking about it on social media (which is truly exciting). What is it? It’s the National Institutes of Health launching of 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. As a person seated at the table of the NIH’s Down Syndrome Consortium, I know how much effort was put into this endeavor by committee members but more importantly…the NIH staff.

And that being said…let’s talk about how the local and regional Down syndrome organization can promote the registry. First, your newsletter. Then, your blog??? Put the link out on social media! What about at your next event? Getting the word out is great. There’s more…but here is what you need to know so that you can relay this information to families:

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.

If participants give permission to be contacted, the registry coordinator can inform them of research studies in which they may be interested. Results from these studies will help researchers better understand Down syndrome and how to treat its accompanying health problems across the lifespan. “DS-Connect is for people of all ages, not just children,” said Dr. Maddox. “Right now, we don’t have much data on older individuals with Down syndrome, and that’s been a problem. People with Down syndrome are living longer, and researchers and physicians will require information about the health issues and needs of these individuals to make recommendations about their health care.”

Just one more suggestion before I go. Why not offer your resources (your internet-connected computers) for families to come in and register? Have a DS-registry Day with volunteers on hand to help out, refreshments and lots of smiling faces. Or just let people know that your resources are available to them. People are talking about it….and that means that it’s an opportunity for your organization to be 
“front and center” in the conversation. Do you tell your stakeholders that you are the information center for everything Down syndrome? Here’s another chance to prove it.

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


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