Congenital upper limb difference patient registries: characteristics, comparisons and recommendations.

Abstract

Clinical registries that allow longitudinal patient follow-up with standardized outcome measures are useful tools for collecting data that can be used to inform patients and clinicians about the aetiology, natural history and response of various conditions to treatment. Registries are being employed across the world for children with congenital upper limb differences where the benefits of accumulated data for this heterogenous group of significant conditions are proving invaluable including the Congenital Upper Limb Difference registry in the United States, the Congenital Upper Limb Anomaly North registry in northern Europe, the Australian Hand Difference Register in Australia and the British Society for Surgery of the Hand Registry in the UK. These registries collect similar data allowing effective interoperability while retaining individual features unique to each registry. Recommendations for further development are made based on analysis of the development and methodology of these existing registries.