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Health Agencies Update
March 24/31, 2015

New Tool for Down Syndrome Research

Author Affiliations

Copyright 2015 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.

JAMA. 2015;313(12):1199. doi:10.1001/jama.2015.2193

Researchers, clinicians, and other professionals with an interest in Down syndrome can now access deidentified data from DS-Connect: The Down Syndrome Registry, where people in the Down syndrome community voluntarily and securely store personal health information, including symptoms, diagnoses, and other medical issues (https://dsconnect.nih.gov/en/for-professionals.html).

The resource, which was established by the National Institutes of Health (NIH), is freely available to registered professionals for planning clinical studies, recruiting trial participants, and generating new topics for investigation. Three levels of access reflect the differing needs of professional users. Level 1, which does not require formal administrative review, provides access to registry survey questions and answers; level 2 provides information for statistical evaluations and other analyses; and level 3 permits professionals to use registry data for commercial purposes or recruit individuals for clinical studies. The NIH has set up a special committee to review proposals to use the registry for such recruitment efforts.