Medical registries represent vital patient interests and should not be dismantled by stricter regulation
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Updated: May 20, 2026

Establishment of a Clinic-based Biorepository
Published on: May 29, 2017
Mats G Hansson1, Bengt Simonsson, Nils Feltelius
1Centre for Research Ethics & Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Sweden. mats.hansson@crb.uu.se
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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