The National Down Syndrome Registry was launched in 2013 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.
Participants can anonymously compare their health experiences with those of others in the registry and users can also “opt in” to be contacted to take part in research studies.
The registry is run by the National Institute of Health’s Down Syndrome Consortium — which includes self-advocates, family members, federal officials and leaders from advocacy organizations.
For more information or to register, see https://dsconnect.nih.gov/
Posted by Sheri Abrams, Attorney at Law, www.sheriabrams.com