The Down Syndrome Registry is an important step toward improving Down syndrome research because it will link people with Down syndrome and their families to researchers and health care providers in a novel way. Individuals with Down syndrome, or family members on their behalf, who volunteer to take part can create their own personalized profiles describing their health history, demographic information, and other data. Users can also complete health related surveys that allow for comparison of medical information among users while still maintaining privacy. In the future, the Registry will also be linked to a biobank that will store donated samples, such as cells and tissues. Researchers can alert the Registry Coordinator about recruitment for upcoming studies. Registry members who are interested in research studies can give permission to be contacted by the Registry Coordinator about taking part in specific clinical studies for new medications and other treatments.
