The role of drug and disease registries in rheumatic disease epidemiology.

PURPOSE OF REVIEW

This review highlights the present state of efforts at registry implementation which exist internationally. These efforts are contrasted with those in the USA.

RECENT FINDINGS

The implications of the different data which are derived from diverse registry sources are discussed. The need for long-term data from large and varied sources is fulfilled by registries that collect data from different populations. The potential differences in the nature of the data derived from these registries is dependent upon the national healthcare system from which they are derived, as there are significant differences in access to newer biologic agents which are inconsistent across countries.

SUMMARY

Registry data are critical in order to develop an understanding of the performance and safety of new agents in the real world. The challenges for implementing a registry are manifold in the USA because of the somewhat chaotic nature of the healthcare delivery system. In order to overcome these unique challenges, registries in the USA need to be exceptionally well organized and funded, while maintaining independence from the pharmaceutical industry funding sources in the reporting and interpretation of data in peer-reviewed publications. Examples of these registries are provided and discussed.