The NIH has launched a new web tool to provide medical professionals and researchers with de-identified information from its Down syndrome registry.
DS-Connect, the NIH's Down Syndrome registry, was launched in September 2013 and is administered by the Down Syndrome Consortium and a Registry Team, made up of National Institute of Child Health and Human Development officials and administrators of PatientCrossroads, a data company that creates and manages databases.
People with a professional scientific interest in Down syndrome can set up an account for free and view de-identified information. Researchers can also apply for higher-level access to perform customized searches and work with the registry coordinator to arrange surveys or clinical trials of members of the registry.
The registry and the new access to de-identified information are intended to further an understanding of the condition and the associated health risks. Life expectancy for someone with Down syndrome is 60 years, according to the National Down Syndrome Society. There are currently 400,000 people with Down Syndrome who live in the U.S., and 2,756 who have signed up for the registry.
"For the purpose of conducting clinical trials, the DS-Connect registry can provide a large pool of potential participants who share common features, such as medical condition, age, and gender," said George T. Capone, M.D., director of the Down Syndrome Clinic and Research Center at Kennedy Krieger Institute in Baltimore.