CoRDS Registry: An HIT Case Study Concerning Setup and Maintenance of a Disease Registry

Seth Trudeau (Sanford Health, USA)
Copyright: © 2013 |Pages: 207
EISBN13: 9781466641471|DOI: 10.4018/978-1-4666-2671-3.ch012
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The Coordination of Rare Diseases at Sanford (CoRDS) registry has been started to provide a central repository of data for participants suffering from a number of rare diseases and to provide those participants with a resource to learn more about their disease and, in a future enhancement, connect with others that are afflicted. The second purpose of the registry is to provide a resource for researchers to identify and recruit potential participants for their research studies. This case study will focus on the technical aspects of setting up a registry and providing access to participants and their medical team, who will enter data about their disease, and researchers, who will access de-identified data to include in their research. Security of the external website and access to Protected Health Information (PHI) are the main areas of concern with this registry.
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