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Medical registries represent vital patient interests and should not be dismantled by stricter regulation
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Haematology.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
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2012 (English)In: Cancer Epidemiology, ISSN 1877-7821, E-ISSN 1877-783X, Vol. 36, no 6, 575-578 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2012. Vol. 36, no 6, 575-578 p.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-182557DOI: 10.1016/j.canep.2012.06.009ISI: 000312260900024PubMedID: 22796267OAI: oai:DiVA.org:uu-182557DiVA: diva2:560008
Available from: 2012-10-11 Created: 2012-10-11 Last updated: 2017-12-07Bibliographically approved

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Hansson, Mats GSimonsson, BengtForsberg, Joanna Stjernschantz

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