Thursday, January 29, 2015

NIH launches tool to advance Down syndrome research

DS-Connect: The Down Syndrome Registry
The National Institutes of Health has launched a subsite of DS-Connect: The Down Syndrome Registry for researchers, clinicians, and other professionals with a scientific interest in Down syndrome to access de-identified data from the registry. This Web portal will 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 Participation in the registry is completely voluntary and can be withdrawn at any time,” said Melissa Parisi, M.D., Ph.D., of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, which funded and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. “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. 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.


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