A world first dry eye registry, established in Sydney, will collect real-world data that clinicians can access to determine the long-term effectiveness and safety of treatments for dry eye.
The prevalence of dry eye ranges from 5% to 50% worldwide and occurs more frequently in women and the elderly. It is a growing public health concern due to its impact on a patients’ quality of life, despite the availability of multiple treatments. Mask wear during the COVID-19 pandemic has exacerbated dry eye symptoms. Despite the many therapies, devices and surgical procedures developed to treat dry eye, few have been evaluated using post-market surveillance.
The registry will help to understand the natural history of dry eye, to predict those patients who are at a higher risk of more severe disease and to tailor treatment for individual patients
The Save Sight Dry Eye Registry is the world’s first international, interdisciplinary dry eye registry. The registry international steering committee is led by The University of Sydney, Save Sight Institute Professor Stephanie Watson.
“Clinical registries are beginning to play significant roles in healthcare decision making as they are able to collect real-world data over longer periods of time” said Professor Watson. “Critically, they are able to determine the long-term effectiveness and safety of treatments for dry eye.”
The Save Sight Dry Eye Registry will allow clinicians to anonymously enter information into the registry that relates to multiple aspects of dry eye management, including the treatments used, individual patient-reported outcomes and adverse reactions. This information will have positive outcomes for patients, clinicians, government health institutions and industry. Specifically in the case of dry eye, because usually once drugs are approved for treatment, there is usually no post-market surveillance.
Professor Fiona Stapleton from the School of Optometry and Vision Science, UNSW Sydney said that “The registry will help to understand the natural history of dry eye, to predict those patients who are at a higher risk of more severe disease and to tailor treatment for individual patients.”
The registry generates a patient education tool in the form of a patient graph. This assists clinicians to monitor and individualise patient treatments over time and allows the patient to become more involved in their treatment journey. Once established, the registry will be able to evaluate the clinical and patient-reported outcomes from emerging therapies.
The registry allows patients to complete online patient reported outcome questionnaires such as the Ocular Surface Disease index and clinicians to grade surface staining efficiently. “In my practice this has really helped me to determine which patients would be suitable for the newer therapies on the market, as these data may be needed for authority approval” Professor Watson commented.
Dr Maria Cabrera-Aguas recently featured the registry in the Sydney Eye Podcast: https://bit.ly/3pZT6OT. The podcast describes how the registry was developed, its advantages and how ophthalmologists and optometrists can request access to use it.
To join the registry?
• Request access at https://savesightregistries.org and click ‘request access’
You will be asked to complete a brief training session before being granted access to the registries
• For further information:
Contact firstname.lastname@example.org or email@example.com.