World’s first international dry eye registry

September 24, 2022 Dr Himal Kandel and Professor Stephanie Watson OAM

The Save Sight Dry Eye Registry (SSDR) is the first multinational, web-based interdisciplinary registry able to collect high-quality outcome data from dry eye patients in clinical settings. With over 35 clinicians at 30 sites in Australia, New Zealand, Spain, Germany and the UK, the registry has grown to include about 1,000 clinical visits of 245 patients (488 eyes) with a dry eye diagnosis. Registry data is uncovering key aspects of the natural history and treatment outcomes of dry eye in real-world settings.

 

Appropriate and scientific evaluation of patient-reported outcomes, especially the symptoms is crucial in dry eye management. The SSDR allows real-time measurement and scoring of the symptoms which is extremely useful for clinician decision making.

 

The prospectively designed SSDR collects information on the patient and their dry eye signs and symptoms. The data collected align very closely with the Tear Film and Ocular Surface Society’s (TFOS) Dry Eye Workshop II report. The patient-reported outcomes data are collected via the Ocular Surface Disease Index (OSDI), The Ocular Comfort Index (OCI), and Patient Health Questionnaire (PHQ-4). The baseline (index) visits analysis showed 90% of cases are evaporative dry eye, 43% are aqueous-deficient dry eye and 7% have corneal neuropathic pain. More than 80% of dry eye patients are female and two-thirds of the cases are white/Caucasians.

 

The SSDR is a clinical tool that helps clinicians evaluate and monitor outcomes in dry eye patients, with quick and efficient data entry. The automatically generated user-friendly graphs allow clinicians to easily observe changes in outcomes to enable effective patient education. Clinicians can straightforwardly generate outcome reports to anonymously compare and benchmark their practice and patient outcomes with those in the registry.

 

We find the registry very useful in everyday clinical practice for easily reviewing patients’ scores from OSDI and OCI questionnaires, signs and treatments over time and showing the patient their treatment journey.

 

The registry is available to clinicians for free and is CPD-accredited with the Royal Australian and New Zealand College of Ophthalmologists (RANZCO). To request access, visit https://savesightregistries.org. A brief training will be provided before granting access. For further information, please contact ssi.ssr@sydney.edu.au.

 

Dr Himal Kandel is the inaugural Kornhauser research associate at the University of Sydney’s Save Sight Institute, with a special interest and expertise in quality-of-life research.

 

Professor Stephanie Watson OAM is the chief investigator at Save Sight Dry Eye and Keratoconus registries; head of the Corneal Research Group at Save Sight Institute; head of the Corneal Unit at Sydney Eye Hospital; chair of Australian Vision Research; deputy director of Industry, Innovation and Commercialisation at Sydney Nano Institute; and has appointments at the Sydney Children's and Prince of Wales hospitals.