Dedicated to finding the best ways to preserve sight without unwanted side effects.

This research project is investigating the safety, effectiveness and possible adverse outcomes of new treatments for macular degeneration (such as injections into the eye). The risks and benefits of these new treatments are being tracked in participating ophthalmic practices. A fundamental issue for health care providers is whether the interventions they support actually benefit patients both in clinical terms and from the patient’s perspective.  Yet information as to the effectiveness and efficiency of ophthalmology treatment is generally only produced from controlled trial data. This is not ideal as it is can be assumed that the people who participate in clinical trials may be more motivated and health conscious than individuals in the general population. This can mean that the resultant clinical trial estimates of adverse events are usually lower than they are for the general population. This is particularly evident in the case of elderly people who are those most at risk of developing macular disease.

Objectives

The FRB! Project has three aims:

• To monitor and evaluate new treatment strategies and combinations of treatments for AMD to ensure the best possible outcomes for patients by:
  
  • establishing an electronic quality management audit of de-identified data across a national network of treatment centers
  • monitoring how patients feel about their visual quality of life
  • facilitating national performance benchmarking so that participating clinicians can monitor and compare their results with those of their peers developing evidence based clinical management guidelines for clinicians which will enable best practice treatment of AMD.
• To introduce the concept of data linkage to ophthalmological research by establishing a demonstration project based in WA.  Post-marketing surveillance and risk assessment of new pharmaceutical drugs can identify adverse events that did not appear during the drug approval process. Linkage analysis is a powerful method of tracking outcomes and adverse events throughout entire populations; and although it is currently not possible to establish such a project nationally it is anticipated that data from the pilot project will provide preliminary evidence in this regard.
• To utilise the national network of treatment centres to facilitate significant research into the outcomes of, firstly, other retinal conditions and then other ophthalmic conditions like glaucoma; to undertake genotype/phenotype analysis and develop new surrogate retinal imaging markers to predict disease progression and outcomes. The national network will also strengthen relationships between private practice and research institutes and further develop the depth of research in this field.

Achievements

Stage One of the data management system has been developed and tested in three academic centres. Data collection has also commenced. Further modifications are nearing completion before the project is extended into private practices in Sydney and Melbourne, and later in Perth, Brisbane and Adelaide. Doctors can use the system to display or print a chart to show how vision is responding to treatment. This has been very well received by patients who are happily completing the assessment of visual function questionnaire with assistance from their carer or a staff member. These will be completed annually and will enable us to scientifically monitor how the patients feels about their visual quality of life ie whether they think the treatment is helping to improve their day to day quality of life.

Medical team

The team behind the Fight Retinal Blindness Project is led by A/Prof Mark Gillies and includes A/Prof Ian McAllister and Prof Tien Wong.

Project partners

Novartis Pharmaceuticals, Save Sight Institute, Centre for Eye Research Australia and Lions Eye Institute.

Contact us

If you would like more information about this project, contact us. To make a donation to support this project, click here.