NDSS is excited to be a part of DS-Connect™: The Down Syndrome Registry, the new Down syndrome registry hosted by the National Institutes of Health (NIH) and the Down Syndrome Consortium. The goals of DS-Connect are to gain a better understanding of Down syndrome, to learn more about the health issues associated with Down syndrome, to develop new treatments for Down syndrome and to improve care for people with Down syndrome. NDSS is encouraging all self-advocates and their families to learn more and join the registry. All information is available below in a letter from Self-Advocate Advisory Board Member Mitchell Levitz.
Dear Down Syndrome Self-Advocates, Families, and Friends:
My role as a self-advocate involved with the Down Syndrome Consortium is to make sure that people with Down syndrome are encouraged to participate in any research projects that may come up. You may remember that some of us went to the Buddy Walk® on Washington in Washington, DC this year to advocate and speak with our senators and representatives, asking for their support for additional funding for the National Institutes of Health (NIH) to do research. Participating in research is important because it allows us, as self-advocates, the opportunity to communicate what is important to us and our health. We can learn from each other with the information that we provide.
DS-Connect™: The Down Syndrome Registry, is a new Down syndrome registry hosted by the National Institutes of Health (NIH) and the Down Syndrome Consortium that recently came out for you to participate in. To participate and contribute to research that will help in learning more about Down syndrome, you may join and register with DS-Connect™: The Down Syndrome Registry.
I participated in testing out the registry survey. It involves signing a consent form saying that you understand the purpose of the registry and then you provide information about yourself. There are many questions related to your family history and your own personal health. For me, it was helpful to complete this together with my parents. You may want to get someone to help you, also. It is important for each of us to speak up for ourselves by participating in a national research project. Your input is important because it will help the Down syndrome community to understand Down syndrome better and the issues that are important to us. Your input will be kept private, and we encourage you to participate.
We encourage individuals with Down syndrome, family members, researchers and affiliates to check out the DS-Connect™: The Down Syndrome Registry website for additional information. For any questions, please e-mail firstname.lastname@example.org or call 800-221-4602.
Self-Advocate Advisory Board Member
National Down Syndrome Society