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NIH Launches Web Portal for Access to Down Syndrome Registry

February 4, 2015
by Rajiv Leventhal
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The National Institutes of Health (NIH) has launched a web portal for researchers, clinicians, and other professionals with a scientific interest in Down syndrome to access de-identified data from its Down syndrome registry.

The DS-Connect registry will aim to help approved professionals to plan clinical studies, recruit participants for clinical trials, and generate new research ideas using information gathered from the registry participants. “DS-Connect is a centralized, secure website where people in the Down syndrome community can store their health information related to Down syndrome. Participation in the registry is completely voluntary and can be withdrawn at any time,” Melissa Parisi, M.D., Ph.D., of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, which funded and developed the registry, said in a news release. “It’s also a valuable resource for professionals in health care and science, who can use the de-identified data from the registry to better understand the health characteristics and needs of people with Down syndrome.”

De-identification is the process of separating personal information from the person who contributed the data. The practice is commonly used to keep health information confidential. People with a scientific interest in Down syndrome may sign up for a free professional account to access the data. After registering, they can then view information about participants’ health histories, including symptoms, diagnoses, and other medical issues, according to NIH officials. Researchers may also apply for higher-level access to perform customized searches of the data, propose new survey questions, or identify a pool of participants for a clinical trial. The DS-Connect registry coordinator will then notify eligible participants who have previously indicated a willingness to be contacted about opportunities to enroll in clinical trials.

DS-Connect was launched in September 2013, with input from the Down Syndrome Consortium, a public-private partnership established to foster the exchange of information on Down syndrome research. Results from these studies are intended to increase understanding of Down syndrome and how to treat its accompanying health problems across the lifespan.

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