What is the National Down Syndrome Registry?

The National Down Syndrome Registry was launched in 2013in 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...