Welcome to the Down Syndrome Consortium

Welcome to the Down Syndrome Consortium

DR. YVONNE MADDOX: Hello, I’m Dr. Yvonne Maddox and I’m Deputy Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health, or NIH as we call ourselves. I also chair the NIH Down Syndrome Consortium, and I’m here today with Stormie Zanfordino and his parents. TONY ZANFORDINO: Tony.
DR. MADDOX: And Dian. And they are here with me as I talk with them about the NIH Down Syndrome Consortium, the new Down syndrome website, and the new Down syndrome registry. And I wanted to just say first to the group that we are so pleased to have you here and also to say that the NIH Director was responsible for actually creating the Down Syndrome Consortium because it was in 2006 that he charged a working group to look at the various institutes that are involved in Down syndrome research, and to find a way for us to bring our research activities together under a partnership. And what the consortium has done is to establish a Down syndrome registry that we call DS-Connect. This is a registry that allows individuals with Down syndrome and their family members on their behalf provide their contact information, any medical history that they have that’s related to the survey and questionnaire that we provide them with. And we’re hopeful that this information will allow researchers and clinicians out there to get a better sense of what some of the needs really are and for us to recruit individuals into clinical trials so that we can develop more treatment and more technology to be able to care for individuals with Down syndrome. MRS. ZANFORDINO: How can we help you get this done? DR. MADDOX: Well, let them know that the consortium is out there. What the consortium is doing is helping to design a research agenda for Down syndrome. Also let them know that the website is there because the website has updated information on what’s going on not only at NIH in Down syndrome research, but what’s going on around the country. And then you need to let them know that the registry exists because we really want people to sign up for this registry. MRS. ZANFORDINO: We’ll definitely do what we can to help, and you can count on us helping out. DR. MADDOX: And thank you so much for coming here and working with us today but also being part of our team now, because I see you as ambassadors who will really be part of the team helping us get out these important communication messages. STORMIE: Bye Mrs. Maddox. DR. MADDOX: Goodbye Stormie, and again thank you so much for being here today. STORMIE: Okay. DR. MADDOX: And being here with your family. We really appreciate it.

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