Developing a Congenital Upper Limb Difference Registry in Australia.

Abstract

Clinical registries are increasingly common and have value in conditions such as congenital upper limb differences where collection of adequate data for scientific study can be challenging due to small numbers and clinical, surgical and psychosocial heterogeneity. This article discusses the motivation, purpose and development of the Australian Hand Differences Register before examining some of the challenges faced during its implementation and considering limitations of registry-derived data. Level of Evidence: Level V (Diagnostic).