From Uppsala U-Sweden: Medical registries represent vital patient interests and should not be dismantled by stricter regulation

http://www.ncbi.nlm.nih.gov/pubmed/22796267

Cancer Epidemiol. 2012 Jul 13. [Epub ahead of print]

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

Hansson MG, Simonsson B, Feltelius N, Forsberg JS, Hasford J.

Source

Centre for Research Ethics & Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Sweden.

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.