Contemporary Issues for Protecting Patients in Cancer Research: Workshop Summary by Sharyl J. Nass

Author:Sharyl J. Nass
Language: eng
Format: epub
Publisher: The National Academies Press
Published: 2014-09-24T00:00:00+00:00

FIGURE 2 A. Typical registry architecture. Usual core components of registries include: functionality for data entry, a database of deidentified data, and facility for inquiry and/ or analysis of that data based on the privacy and access policy of the registry owner, to which all participants must consent in advance. Contact information for individual participants—if available—is most often loosely coupled, and outside the registry. B. Core component of the Platform for Engaging Everyone Responsibly (PEER). PEER is participant-centric with privacy controls from Private Access that empower participants to create and manage access to all of their information. The right to access contact details in the registry is separately managed by each participant.

SOURCE: Terry presentation on February 24, 2014.

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