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


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.


CONCLUSIONS
We conclude that medical registries should be promoted both for research and quality control, and that the regulatory bureaucratic burden should be reduced.
Centre for Research Ethics & Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Sweden. mats.hansson@crb.uu.se
Mats G
MG
Hansson
Bengt
B
Simonsson
Nils
N
Feltelius
Joanna Stjernschantz
JS
Forsberg
Joerg
J
Hasford
D004341:Drug Evaluation; D005062:European Union; D005260:Female; D006801:Humans; D008297:Male; D018907:Privacy; D011786:Quality Control; D016032:Randomized Controlled Trials as Topic / Q000592:standards; D012042:Registries / Q000941:ethics / Q000592:standards*; D016896:Treatment Outcome