A new national registry is now available in an effort to connect individuals who have Down syndrome with researchers studying the chromosomal disorder.
The confidential online database known as DS-Connect is designed to collect health information on a voluntary basis from those with Down syndrome or family members who sign up on their behalf.
“The new registry provides an important resource to individuals with Down syndrome and their families,” said Yvonne T. Maddox, deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. “The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research.”
Participants can anonymously compare their health experiences with those of others in the registry and users can also opt to be contacted to take part in research studies.
For more information or to register click here.
Posted by Sheri Abrams, Attorney at Law, www.sheriabrams.com