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

Hansson, Mats G (author)
Uppsala universitet,Centrum för forsknings- och bioetik
Simonsson, Bengt (author)
Uppsala universitet,Hematologi
Feltelius, Nils (author)
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Forsberg, Joanna Stjernschantz (author)
Uppsala universitet,Centrum för forsknings- och bioetik
Hasford, Joerg (author)
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 (creator_code:org_t)
Elsevier BV, 2012
2012
English.
In: Cancer Epidemiology. - : Elsevier BV. - 1877-7821 .- 1877-783X. ; 36:6, s. 575-578
  • Journal article (peer-reviewed)
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  • 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.

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