The first of its kind in the world, the Save Sight Registries provides a scientific, web-based platform for eye specialists worldwide to capture high-quality clinical data on patient treatments and outcomes from routine clinical practice.
Our system tracks and analyses "real world" patient treatment outcomes for leading causes of visual impairment, making it immediately relevant to clinicians, researchers, public health providers and policy makers seeking to fight ocular blindness and improve patient outcomes in Australia and internationally. “Real world” refers to the use of a treatment in the general population after it has been shown to be effective in highly controlled clinical trials.
The Registries, an international project, have collected data from Europe, Asia, Africa and North America. Their datasets, which are compliant with international measurement tools for health outcomes (ICHOM) for our neovascular age-related macular degeneration module, enable current and emerging therapies to be evaluated for clinical efficacy, cost-effectiveness and safety. This information can indicate which are the best ways to treat different diseases in specific local conditions.
The Fight Retinal Blindness! Project serves as the foundation of the Save Sight Registries. The modules track the effectiveness and safety of new and emerging treatments for age-related macular degeneration, diabetic retinopathy and retinal vein occlusion which are among the commonest causes of vision impairment and blindness worldwide.
Glaucoma is the major cause of irreversible blindness in Australia. Until recently, glaucoma surgery was associated with a relatively high complication profile. In response to this need, a group of surgical devices known as ‘minimally invasive glaucoma surgery’ (MIGS) have become available. Early data suggests MIGS devices have a better short-term safety profile than traditional surgery, but longer-term safety and efficacy has yet to be established.
Randomised trials are too expensive as a tool to address deficiencies in the current evidence base. In contrast, registry data with prespecified mandatory data points, that track ‘real world’ outcomes, is a cost-effective way to obtain long-term follow-up data. For this reason, we developed a registry of glaucoma outcomes as part of Save Sight Registries at the University of Sydney: Fight Glaucoma Blindness! (FGB!).
Uveitis is a group of inflammatory eye diseases that can affect people of all ages, ranging from young children to the elderly. Severe disease may cause visual loss or blindness.
Despite this, there are few good quality publications relating to uveitis in the medical literature because individual uveitis syndromes are often relatively rare. Registry data will be particularly useful in the study of uveitis, allowing a large amount of data to be collected from multiple centres around the world.
The Fight Uveitis Blindness! module gathers a comprehensive range of quantitative and qualitative data on the treatment of uveitis. The registry will collect information on:
The module tracks:
Outputs of the module:
In 2024, data from Fight Uveitis Blindness Registry was used to help show that Adalimumab is safe and effective in Uveitis and this evidence was then used by the Pharmaceutical Benefits Advisory Committee in their decision to fund Adalimumab for patients with Uveitis across Australia.
The eye is the second most common site of melanoma after the skin. Current treatments, although often successful, may reduce vision or result in loss of an eye. Successful management of eye (ocular) melanomas requires a multidisciplinary approach and detailed collection of diagnostic, treatment and follow up information.
Cancer registries in Australia are currently state-based and collect only minimum information. The essential data required for understanding eye melanoma recurrence rates, metastases and treatment success is missing. To address this gap, the Fight Tumour Blindness! Registry collects data on survival and quality of life following treatment of ocular melanoma.
Retinopathy of Prematurity (ROP) is a vision-threatening disease associated with abnormal vascular proliferation in the developing retina of prematurely born babies. Each year, more than 30,000 babies worldwide develop vision impairment due to retinopathy of prematurity, including complete blindness.
The Fight Childhood Blindness! Registry is the first multinational ROP Registry for babies outside of Europe. The aim of this research is to collect real-world data on babies treated for ROP into an Open Access Registry. Analysis of the resulting data will provide real-world evidence on treatment outcomes and the risks and benefits of the different treatments for ROP.
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South Block, Sydney Eye Hospital
8 Macquarie Street
Sydney, NSW 2000
