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, and internationally in New Zealand, Switzerland and Singapore . A pilot is being trialed currently in the Netherlands and anticipated to expand to Belgium, France, Germany and Spain.
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.
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, wellbeing 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 there is some concern about their long-term side effects.
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 will 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:||Amparo Herrera-Bond|
|Registry information and support:||Email: SSI.SSR@sydney.edu.au|
Phone: +61 2 9382 7304
Arnold JJ, Campain A, Barthelmes D, Simpson JM, Guymer RH, Hunyor AP, McAllister IL, Essex RW, Morlet N, Gillies MC; Fight Retinal Blindness Study Group (2015). Two year outcomes of “treat and extend” intravitreal therapy for neovascular age-related macular degeneration. Ophthalmology, 122(6): 1212–1219.
Barthelmes D, Nguyen V, Daien V, Campain A, Walton R, Guymer R, Morlet N, Hunyor AP, Essex RW, Arnold JJ, Gillies MC; Fight Retinal Blindness Study Group (2017, in press). Two year outcomes of “treat and extend” intravitreal therapy using aflibercept preferentially for neovascular age-related macular degeneration. Retina, Jan. (Epub ahead of print)
Barthelmes D, Campain A, Nguyen P, Arnold JJ, McAllister IL, Simpson JM, Hunyor AP, Guymer R, Essex RW, Morlet N, Gillies MC; Fight Retinal Blindness! Project Investigators (2016). Effects of switching from ranibizumab to aflibercept in eyes with exudative age-related macular degeneration. British Journal of Ophthalmology, 100(12): 1640–1645.
Barthelmes D, Walton R, Campain AE, Simpson JM, Arnold JJ, McAllister IL, Guymer RH, Hunyor AP, Essex RW, Morlet N, Gillies MC; Fight Retinal Blindness! Project Investigators (2015). Outcomes of persistently active neovascular age-related macular degeneration treated with VEGF Inhibitors: observational study data. British Journal of Ophthalmology, 99(3): 359–364.
Barthelmes D, Walton RJ, Arnold JJ, McAllister IL, Simpson JM, Campain A, Hunyor AP, Guymer R, Essex RW, Morlet N, Gillies MC; Fight Retinal Blindness! Project Investigators (2014). Intravitreal therapy in bilateral neovascular age-related macular degeneration. Ophthalmology, 121(10): 2073–2074.
Essex RW, Nguyen V, Walton R, Arnold JJ, McAllister IL, Guymer RH, Morlet N, Young S, Barthelmes D, Gillies MC; Fight Retinal Blindness Study Group (2016). Treatment patterns and visual outcomes during the maintenance phase of treat-and-extend therapy for age-related macular degeneration. Ophthalmology, 123(11): 2393–2400.
Gillies MC, Nguyen V, Daien V, Arnold JJ, Morlet N, Barthelmes D (2016). Twelve-month outcomes of ranibizumab vs. aflibercept for neovascular age-related macular degeneration: data from an observational study. Ophthalmology, 123(12): 2545–2553.
Gillies MC, Campain A, Barthelmes D, Simpson JM, Arnold JJ, Guymer RH, McAllister IL, Essex RW, Morlet N, Hunyor AP; Fight Retinal Blindness Study Group (2015). Long-term outcomes of treatment of neovascular age-related macular degeneration: data from an observational study. Ophthalmology, 122(9): 1837–1845.
Gillies MC, Campain A, Walton R, Simpson JM, Arnold JJ, Guymer RH, McAllister IL, Hunyor AP, Essex RW, Morlet N, Barthelmes D; Fight Retinal Blindness Study Group (2015). Time to initial clinician-reported inactivation of neovascular age-related macular degeneration treated primarily with ranibizumab. Ophthalmology, 122(3): 589–594.
Gillies MC, Walton RJ, Arnold JJ, McAllister IL, Simpson JM, Hunyor AP, Guymer R, Essex RW, Morlet N, Barthelmes D(2014). Comparison of outcomes from a phase 3 study of age-related macular degeneration with a matched, observational cohort. Ophthalmology, 121(3): 676–681.
Gillies MC, Walton R, Liong J, Arnold JJ, McAllister I, Morlet N, Hunyor A, Guymer R, Keeffe J, Essex R, Herrera-Bond A, Glastonbury B, Simpson JM, Barthelmes D. (2014). Efficient capture of high quality data on Outcomes of treatment for macular diseases: the Fight Retinal Blindness! Project. Retina, 34(1): 188–195.
Gillies MC, Walton R, Simpson JM, Arnold JJ, Guymer RH, McAllister IL, Hunyor AP, Essex RW, Morlet N, Barthelmes D; Fight Retinal Blindness! Project Investigators (2013). Prospective audit of exudative age-related macular degeneration: 12-month outcomes in treatment-naïve eyes. Investigative Ophthalmology & Visual Science, 54(8): 5754–5760.
to Save Sight Institute’s mailing list for news and updates