Medical registries represent vital patient interests and should not be dismantled by stricter regulation

Abstract Background Medical registries serve patients as beneficiaries of quality standards and new treatment opportunities. However, it has been argued that registries threaten patient privacy interests and should therefore be more strictly regulated. Methods and Results With the European Treatment...

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Bibliographic Details
Published in:Cancer epidemiology 2012-12, Vol.36 (6), p.575-578
Main Authors: Hansson, Mats G, Simonsson, Bengt, Feltelius, Nils, Forsberg, Joanna Stjernschantz, Hasford, Joerg
Format: Article
Language:English
Subjects:
Cancer
Drug Evaluation
Epidemiology
Ethics
European Union
Female
Hematology, Oncology and Palliative Medicine
Humans
Internal Medicine
Male
Privacy
Quality Control
Randomized Controlled Trials as Topic - standards
Registries
Registries - ethics
Registries - standards
Treatment Outcome
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Summary:Abstract Background Medical registries serve patients as beneficiaries of quality standards and new treatment opportunities. However, it has been argued that registries threaten patient privacy interests and should therefore be more strictly regulated. Methods and Results With the European Treatment and Outcome Study for Chronic Myeloid Leukemia as a concrete example we identify and describe how four of the major arguments put forward for stricter regulation fail. Conclusion We conclude that medical registries should be promoted both for research and quality control, and that the regulatory bureaucratic burden should be reduced.
ISSN:1877-7821
1877-783X
1877-783X
DOI:10.1016/j.canep.2012.06.009