News Feature | February 10, 2015

NIH Provides Access To De-Identified Data To Help Down Syndrome Research

Christine Kern

By Christine Kern, contributing writer

Data Analytics

DS-Connect allows access to data for clinical research.

The National Institutes on Health has launched a sub-site of its DS-Connect, creating a web portal for approved professionals allowing them access to de-identified patient data from its Down Syndrome Registry. This information will be used in clinical studies or for recruiting patients to generate new research.

The NIH’s 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 glands, hearing loss, vision problems, and heart abnormalities, officials said.

“The new registry provides an important resource to individuals with Down syndrome and their families,” said Yvonne T. Maddox, former deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. “The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research.”

DS-Connect makes de-identified data collected by the registry available to researchers interested in Down syndrome through the Professional Portal. Professionals can access the information to develop research projects and recruit for clinical trials, and the de-identification of data protects the privacy of the registry participants.

Examples of uses of the data from the registry include:

  • recognize the health characteristics of those living with Down syndrome
  • identify medical needs among those living with Down syndrome
  • determine study feasibility and plan for clinical trials and research studies
  • assist with recruitment for studies and surveys
  • use the registry to post study notices

The registry has established three “levels of access” to reflect the differing needs of professional users. Depending on the level of access, researchers can view a participant’s health history, including symptoms, diagnoses and other medical information; perform customized searches of the data; propose new survey questions; or identify a pool of patients for clinical trials.

The NIH initiative is the latest in a series of government efforts to open de-identified data sets to research projects, Both the FDA and CMS have undertaken similar efforts.

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.