Using de-identified patient data from its Down Syndrome Registry, the National Institutes on Health has launched a subsite of its DS-Connect, creating a web portal for approved professionals that are planning clinical studies or recruiting patients to generate new research.
The NIH effort with Down Syndrome is intended to increase understanding of the disease and how to treat accompanying health problems, including the risk of autism, issues with hormones and glads, hearing loss, vision problems and heart abnormalities, officials said.
Researchers can view information on a participant’s health history, including symptoms, diagnoses and other medical information. If approved for a higher level of access, researchers can perform customized searches of the data, proposed new survey questions or identify a pool of patients for clinical trials. The registry will coordinate requests for the latter with eligible participants who have indicated a willingness to enroll.
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It’s the latest example of government entities opening up their data set, in de-identified ways, to spur innovation or improved research. The FDA has undertaken similar efforts, as has CMS.
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. It is a registered trademark of the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
