The Fight Retinal Blindness! project was established in 2009. The robust web-based system developed under this initiative forms the core structure for the Save Sight Registries database and interface.
Clinicians in Australia and worldwide who register to use the Save Sight Registries retinal disease platform will capture data on:
Critically, the dataset which underpins the nAMD registry has been endorsed by the International Consortium for Health Outcomes Measurement (ICHOM) as the preferred minimum dataset for Macular Degeneration and the FRB! system as the preferred tool to collect this data.
The nAMD registry has been implemented successfully in public and private health settings in New South Wales, Victoria, Queensland, Western Australia, South Australia, the ACT and Tasmania. Internationally, the project has a strong presence in New Zealand, Singapore and a few countries in Europe, such as Switzerland, the Netherlands, the UK, Spain, France and Austria.
The web-based user interface has been designed to enable clinicians and delegated authorities (e.g. practice administrators) to enter patient information quickly and easily. Patient records can be set up in 30 seconds and updated for each patient visit in 15 seconds.
Each eye which meets standard baseline criteria (informed by ICHOM and the Save Sight Registries steering committee) is entered into a registry “Audit” (e.g. “Macular Degeneration”) and tracked on a per visit basis by the treating clinician. The platform allows for patient referrals by the primary clinician (“primary doctor”) and for clinician generated delegated authorities (for example, secondary treating clinicians and practice administrators).
Reports charting patient progress (individual eyes treated) can be generated simply with the click of a button and enable clinicians to track outcomes at the individual patient or clinic level. The ability to represent a patient’s progress graphically provides clinicians also with an interactive and educative tool for patients.
The FRB! audits include patient outcomes reports that allow users to view their patient outcomes and benchmark against the anonymised data of the rest of the cohort. Report analytics available to clinicians include:
The economic and social costs of loss of vision to Australians in significant, with the economic cost alone estimated to be more than AU$16 billion annually in direct health system costs, productivity and opportunity losses, well-being costs and other costs for persons aged 40 and over (Access Economics Pty Ltd 2010).
The imperative to reduce the incidence of avoidable blindness and to treat vision loss effectively is therefore clear. We aim to do this by providing a unique software platform for tracking the outcomes of treating eye disease in the real world. Our research is directed towards evaluating the outcomes of treatment of new drugs as they are released into routine clinical practice and then identifying how to use them most effectively.
Macular Degeneration is the most common attributed cause of blindness in Australia accounting for 50 per cent of legal blindness.
A 2011 report by Deloitte Access Economics estimated the total cost of Age-related Macular Degeneration (AMD) to Australia’s health system in 2010 to be around AU$359.1 million. Of this, AU$269.9 million was attributed to total government expenditure on Lucentis® (ranibizumab injection). Total non-health costs associated with vision loss through AMD (e.g. productivity loss; carer opportunity costs) were estimated to be around AU$389.2 million (Deloitte Access Economics 2011).
Two-thirds of AMD cases can now be treated with the relatively new anti-vascular endothelial growth factor (AntiVEGF) drugs. The short- and medium-term effectiveness of these drugs is unprecedented, but long-term treatment has been producing mixed results, this is likely due to differing treatment regimens.
It will be highly beneficial for all concerned to track the “real-world” outcomes of treatment in a large group of ordinary patients as more drugs become available for AMD and other retinal and corneal conditions. This will allow us to identify which practice patterns and treatment regimens work best, which we can publish as treatment guidelines. We already have evidence that Australian patients get amongst the best outcomes in the world.
Diabetes is recognised as the world’s fastest growing chronic condition. Diabetic Retinopathy is the leading cause of blindness in the working population. Diabetic Macular Oedema (DME), a frequent manifestation of Diabetic Retinopathy, is a common cause of diabetes-related vision loss which is preventable and, if diagnosed early, treatable.
A 2015 report prepared by Deloitte Access Economics estimated that at least half of all Australians living with diabetes were not accessing eye tests in accordance with national guidelines. It further estimated that the prevalence of people living with DME would increase substantially if left untreated (est. 42% over 15 years).
Save Sight Registries aims to promote strategies to minimise disease and treatment burdens for people living with diabetes by:
The Save Sight Institute is a not-for-profit entity. The Fight Retinal Blindness! project received start-up funding from The Eye Foundation in 2008 and has been successful in receiving competitive grants from the National Health & Medical Research Council (2010) and the Macular Disease Foundation (2016). The Registries have also been supported by Novartis and Bayer. All support is provided on a non-binding basis either as a research or educational grant.
As a not-for-profit entity the work of the Save Sight Institute is contingent on the generous support of individuals and public and private sector organisations. We welcome your support in our shared fight against retinal and corneal blindness.
|Chief Investigator:||Professor Mark Gillies|
Phone: +61 412 060 313
|Project Manager:||Dymow Barbosa|
|Registry information and support:||Email: SSI.SSR@sydney.edu.au|
Phone: +61 2 9382 7304
Nguyen V, Daien V, Guymer R, Young S, Hunyor A, Fraser-Bell S, Hunt A, Gillies MC, Barthelmes D; Fight Retinal Blindness! Study Group. (2019) Projection of Long-Term Visual Acuity Outcomes Based on Initial Treatment Response in Neovascular Age-Related Macular Degeneration. Ophthalmology, 126(1):64-7
Nguyen CL, Gillies MC, Nguyen V, Daien V, Cohn A, Banerjee G, Arnold J; Fight Retinal Blindness! Study Group. (2018) Characterization of Poor Visual Outcomes of Neovascular Age-related Macular Degeneration Treated with Anti-Vascular Endothelial Growth Factor Agents. Ophthalmology, 6. pii: S0161-6420(18)31470-2
Invernizzi A, Teo K, Nguyen V, Daniell M, Squirrell D, Barthelmes D, Gillies MC. (2018) Type 3 neovascularisation (retinal angiomatous proliferation) treated with antivascular endothelial growth factor: real-world outcomes at 24 months. Ophthalmol
For a complete list of the Save Sight Registries research outcomes, please click here
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