USyd
Clinical and Experimental Ophthalmology
2022 January

The Save Sight Keratoconus Registry – Optometry Module: an opportunity to use real-world data to advance eye care

Himal Kandel, Laura E Downie, Stephanie L Watson

Abstract

There is increasing focus on the value of real-world clinical registry data in multiple medical disciplines, including ophthalmology. However, disease-focused clinical registries that engage optometrists are rare. This paper introduces the Optometry Module of the Save Sight Keratoconus Registry (SSKR) and highlights the potential advantages it can offer to optometrists for improving their quality of patient care and for engaging in research. Optometrists are primary eye care providers and have a major role in providing clinical care to people with keratoconus. The SSKR system has been developed to collects high-quality information on essential clinical parameters including patient-reported outcomes (i.e., quality of life data). The real-world data from the Optometry Module of the SSKR can be analysed to obtain insights into contemporary optometry keratoconus practice, and be used to identify opportunities for improving clinical care. Optometrists’ engagement with the registry supports reflective clinical practice through real-time benchmarking. Optometrists can use the registry system to track patient outcomes, and it provides a framework for educating patients about their keratoconus journey. The system also captures details relating to patient adverse events, with subsequent data analysis enabling risk factors for such events to be identified. In summary, the Optometry Module of the SSKR captures real-world clinical evidence that has the potential to inform practice improvement, facilitate safety surveillance and enable outcomes research in keratoconus, all with the ultimate intent of enhancing care for people living with keratoconus.