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Table of Contents

Patient Registries

Patient Registry- refers to the organisation and processes supporting a patient register– a set of patient records systematized around a particular disease, condition or exposure, and serving “one or more predetermined scientific, clinical or policy purposes” (AHRQ,2007)

  • When using previously collected data, set as minimum the privacy conditions under which the data were collected initially.
    • If a dataset is going to be linked to another, an independent review of privacy risks (example: reidentification, fraud) involved must be conducted.


References

  • "Legal and Ethical Considerations for Registries" In: Gliklich RE, Dreyer NA, Leavy MB, editors. Registries for Evaluating Patient Outcomes: A User's Guide [Internet]. 3rd edition. Rockville (MD): Agency for Healthcare Research and Quality (US); 2014 Apr.


See Also