Dispelling myths about rare disease registry system development-Reference-Cited by-同舟云学术

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Dispelling myths about rare disease registry system development

Published:2013-10-16 Issue:1 Volume:8 Page:
ISSN:1751-0473
Container-title:Source Code for Biology and Medicine
language:en
Short-container-title:Source Code Biol Med

Author:

Bellgard Matthew,Beroud Christophe,Parkinson Kay,Harris Tess,Ayme Segolene,Baynam Gareth,Weeramanthri Tarun,Dawkins Hugh,Hunter Adam

Publisher

Springer Science and Business Media LLC

Subject

Information Systems and Management,Health Informatics,Computer Science Applications,Information Systems

Link

http://link.springer.com/content/pdf/10.1186/1751-0473-8-21.pdf

Reference26 articles.

1. Forrest CB, et al: The case for a global rare-diseases registry. Lancet. 2011, 377 (9771): 1057-1059. 10.1016/S0140-6736(10)60680-0.

2. Mehta A: The how (and why) of disease registers. Early Hum Dev. 2010, 86 (11): 723-728. 10.1016/j.earlhumdev.2010.08.006.

3. Rubinstein YR, et al: Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB). Contemp Clin Trials. 2010, 31 (5): 394-404. 10.1016/j.cct.2010.06.007.

4. Backus LI, et al: Clinical case registries: simultaneous local and national disease registries for population quality management. J Am Med Inform Assoc. 2009, 16 (6): 775-783. 10.1197/jamia.M3203.

5. Evans SM, et al: Development of clinical-quality registries in Australia: the way forward. Med J Aust. 2011, 194 (7): 360-363.

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