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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.
The Journal of Hand Surgery, European Volume
|June 12, 2025
Summary
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.
