It has been nearly a year now since the NIH launched the first National Down Syndrome Registry. Participation in the registry is free and voluntary. Individuals with Down syndrome, or family members, on their behalf, may sign up to create personalized profiles with information about their health histories, including symptoms, diagnoses, and medical visits. The website has been designed to ensure that all information remains confidential. The site will separate users’ names from their health information, so that individuals may compare their health information with that of all other participants in an anonymous manner. Here is the link to DS-Connect: http://dsconnect.nih.gov/
If participants give permission to be contacted, the registry coordinator can inform them of research studies in which they may be interested. Results from these studies will help researchers better understand Down syndrome and how to treat its accompanying health problems across the lifespan.
This PDF link provides more detail on the registry: http://www.researchds.org/wp-content/uploads/2014/09/DS-Connect-Presentation_Reduced-File.pdf