A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry

A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry

There is a need to develop Internet-based rare disease registries to support health care stakeholders to deliver improved quality patient outcomes. Such systems should be architected to enable multiple-level access by a range of user groups within a region or across regional/country borders in a sec...

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Bibliographic Details
Main Authors: Bellgard, M., Macgregor, A., Janon, F., Harvey, A., O'Leary, Peter, Hunter, A., Dawkins, Hugh
Format: Journal Article
Published: Wiley Interscience 2012
Subjects:
disease registries
rare disease
internet
open source
Online Access:http://hdl.handle.net/20.500.11937/7886

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