Establishing and Maintaining Congenital Upper Limb Difference Registries: Insights From Global Experiences

Prospective clinical registries that apply standardized diagnostic criteria and established outcome measures have been developed globally to better understand congenital upper limb differences. This study explores the perspectives of surgeons who have been instrumental in forming and maintaining Congenital Upper Limb Difference registries in the United States (Congenital Upper Limb Difference), Northern Europe (Congenital Upper Limb Anomalies North), Australia (Australia Hand Difference Registry), and the United Kingdom (UK Hand Registry). Objectives included capturing early experiences, identifying logistical challenges, assessing research output, and evaluating the feasibility of an international congenital hand registry.

Semistructured qualitative interviews were conducted with 8 hand surgeons, 2 from each registry: Congenital Upper Limb Difference, Congenital Upper Limb Anomalies North, Australia Hand Difference Registry, and the UK Hand Registry. Participants were selected for their leadership in establishing and sustaining their registries. Interviews were audio-recorded, transcribed verbatim, and analyzed using inductive thematic analysis. Themes, challenges, and recommendations were identified through iterative coding and consensus review.

All participants expressed the value of the registries in enabling longitudinal, aggregated data analysis to generate clinically meaningful insights and address research questions. The participants highlighted the positive impact of the registry on collaborative relationships. Recurring themes included the requirements for success being a clear vision, a defined purpose, and a robust administrative and financial infrastructure. Additionally, all acknowledged the challenges unique to pediatric outcomes measurement. All participants used the Oberg-Manske-Tonkin classification and diagnosis-specific subclassifications; there was variability in the ease of updating data as clinical impressions evolved or diagnoses were revised. Discrepancies existed regarding the ease of conducting research using registry data. Participants discussed possible benefits of establishing a collaborative international registry but emphasized prerequisites, limitations, and the need to address ethical, logistical, and interoperability challenges.

The international experience of establishing and maintaining a Congenital Upper Limb Difference registry varies in execution, logistics, collaboration, and research productivity. However, the registries share notable similarities related to outcome measures, diagnostic criteria, and complexity of collected data. Insights from this international qualitative study can guide optimization of existing registries and inform design of future local or collaborative international efforts.

Qualitative V.