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Congenital upper limb difference patient registries: characteristics, comparisons and recommendations
David McCombe1, Lindley Wall2, Charles Goldfarb2
1Australian Hand Difference Register, Murdoch Children's Research Institute, Australia.
Insights
Clinical registries with standardized data collection are crucial for understanding congenital upper limb differences. Analysis of existing registries informs future development for better patient and clinician insights.
Area of Science:
- Pediatric Orthopedics
- Clinical Data Management
Background:
- Longitudinal patient follow-up with standardized outcomes is vital for understanding disease.
- Clinical registries are increasingly used globally for pediatric conditions.
Purpose of the Study:
- To analyze the development and methodology of existing congenital upper limb difference registries.
- To provide recommendations for the future development of these registries.
Main Methods:
- Review of established congenital upper limb difference registries worldwide.
- Analysis of data collection, interoperability, and unique features of each registry.
Main Results:
- Multiple international registries exist for congenital upper limb differences, collecting similar yet unique data.
- These registries demonstrate the value of accumulated data for this patient group.
Conclusions:
- Existing registries provide invaluable data for patients and clinicians.
- Standardized data collection and interoperability are key for registry advancement.
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.
