Down syndrome is a chromosomal disorder that affects many children and adults in New York. Some may know already that many individuals who live with this disorder qualify for Social Security disability insurance. SSDI provides many people with the financial support they need to manage a disorder, injury or illness. Beyond financial support, however, many people crave a deeper understanding of the disability they live with. With the recent release of a new national registry, many people with Down syndrome will be able to do this.
The registry is called DS-Connect and allows people with Down syndrome or their family members to share information about their unique experience with Down syndrome. In turn, they can learn about the experiences of others and participate in research studies.
The registry is anonymous and was created with research in mind. It is meant to provide a way for researchers who are studying Down syndrome to interact with those who live with the disorder. Those operating the registry are encouraging people of all ages to sign up. While researchers have a substantial amount of data on younger people who live with Down syndrome, they are hoping to get more information from older participants.
With the help of a wide range of participants, researchers are hopeful that DS-Connect can help them provide health care recommendations for people of all ages who live with Down syndrome. Now that the much-anticipated registry has been launched, it will be interesting to see what new information researchers are able to discover. Additionally, New York residents who live with Down syndrome may find the registry to be a useful tool for better understanding the chromosomal disorder.
Source: Disability Scoop, “National Down Syndrome Registry Goes Live,” Shaun Heasley, Sept. 9, 2013