December 2013

Resource for People with Down Syndrome

NIH has launched a free, confidential, Web-based health registry for people with Down syndrome and their families and caregivers.

The registry, called DS-Connect, offers a secure place for people with Down syndrome—or family members on their behalf—to enter and save basic health information. It also can help families stay informed about potential treatments and other efforts to improve the quality of life for people living with Down syndrome.

Down syndrome is one of the most common genetic birth defects nationwide. People who have Down syndrome have a characteristic facial appearance and intellectual difficulties. They may also face other health issues, such as digestive problems, heart defects, and hearing loss.

The basic medical information that participants provide on DS-Connect can be studied by scientists to help them learn more about Down syndrome. The website’s design ensures that this information remains anonymous and confidential.

If participants give permission to be contacted, the registry coordinator can let them know about clinical research studies they might qualify for. Such studies might eventually lead to improved treatments or better quality of life for people with Down syndrome.

To learn more about DS-Connect, or to create a personalized profile for your loved one with Down syndrome, go to http://DSConnect.nih.gov.