The experience of accommodating privacy restrictions during implementation of a large-scale surveillance study of an osteoporosis medication

PURPOSE: To explore whether privacy restrictions developed to protect patients have complicated research within a 15-year surveillance study conducted with US cancer registries. METHODS: Data from enrolling 27 cancer registries over a 10-year period were examined to describe the amount of time needed to obtain study approval. We also analyzed the proportion of patients that completed a research interview out of the total reported by the registries and examined factors thought to influence this measure. RESULTS: The average length of the research review process from submission to approval of the research was 7 months (range,

Midkiff, K., Andrews, E., Gilsenan, A., Deapen, DM., Harris, D., Schymura, MJ., & Hornicek, FJ. (2016). The experience of accommodating privacy restrictions during implementation of a large-scale surveillance study of an osteoporosis medication. Pharmacoepidemiology and Drug Safety, 25(8), 960-968. https://doi.org/10.1002/pds.4008