Learning Objectives:
Introduction: Hearing loss has a major social, mental and financial impact worldwide. This impact is set to increase with our ageing population. Industry are targeting this with an increasing range of surgically implanted hearing devices. There is currently no UK registry capturing data on these devices. In the absence of such data it is difficult to reflect on practices and monitor clinical and cost-effectiveness. Establishing such a registry faces several challenges. We aim to identify the requirements for establishing a successful UK-surgical ear implant registry.
Methods: We performed a systematic review adhering to PRISMA recommendations. Articles were included if they described UK-surgical registry design, development, or provided critical analysis of a surgical registry.
Results: 48 studies were included. The major challenges encountered by registries included: poor rates of data completion, difficulty in securing funding and registry maintenance.
Recommendations included: datasets be selected following stakeholder consensus meetings; datasets be flexible and quick to complete; registry participation should be compulsory; the registry should be useful for clinicians and easy to use; data should undergo rigorous processing and cleaning; patients should be involved in registry development and be able to access and input their own data.
Funding sources included industry, participating hospitals, professional societies, and research grants.
Conclusion: This study provides an overview of the key requirements for successful UK-surgical registry development based on previous registry experiences. Our future plans are to conduct stakeholder interviews and patient focus groups to further inform the development of a successful UK-surgical ear implant registry.
