Save Sight Institute launches National Keratoconus Registry


Save Sight Institute, a research centre of The University of Sydney, is preparing to launch a National Keratoconus Registry to collect high quality data and outcomes from emerging therapies and surgical techniques relating to the management of keratoconus. It is anticipated that the Registry will be expanded internationally. 

Led by Save Sight Institute’s Clinical Professor Stephanie Watson, in collaboration with the Centre for Eye Research Australia in Melbourne, the project involves the development of a software platform to enable the mass collection of anonymous patient data in real-life clinical settings. 

The project is a clear example of how research can be embedded within healthcare delivery, a key recommendation of the 2013 McKeon Strategic Review of Health and Medical Research. 

According to Prof Watson “Many therapies, devices and surgical procedures have been developed to treat keratoconus, but few have been evaluated using post-market surveillance, and there is no system in place to collect such data nationally. Keratoconus tends to affect young adults and has a significant public health impact”.

The first treatment to be evaluated via the registry is cross-linking, a relatively new approach to halting keratoconus progression. Following evaluation of cross-linking treatment protocols, the registry will obtain long-term data on cross-linking, as well as emerging treatments such as the combination of cross-linking with laser and the use of rings. Once established, the registry will evaluate the clinical and patient-reported outcomes emerging therapies. 

Seed funding for the Australian Keratoconus Registry was made possible because of the generosity of patient Mr Larry Kornhauser, who made a $50,000 donation in memory of his late mother, Bettie Kornhauser. 

According to Mr Kornhauser “I was diagnosed with keratoconus when I was 12 and my mother accompanied me to every eye appointment throughout my adolescence and beyond, including my corneal transplant operation. She would be honoured to be a part of this project which will hopefully lead to better treatments for adolescents with keratoconus. Bettie was a committed philanthropist, past president of the Victorian Citizens Advice Bureau, founder of Wear for Success Melbourne and a supporter of numerous not-for-profits and awards to assist disadvantaged young people succeed in their lives." 

Keratoconus reduces vision by altering the biomechanical properties of the cornea. It affects 50-200 people per 100,000 of the general population. Severe visual deterioration affects 20 per cent of Keratoconics and usually occurs in the second and third decades of life due to astigmatism, corneal scarring or both. As it affects young adults, it has a significant public health impact. If vision loss from keratoconus cannot be corrected by spectacles or contact lenses, corneal grafting may be needed, which involves a life-long risk of graft rejection and weakening of the structural integrity of the eye. 

The Australian Keratoconus Registry is based on the highly successful Fight Retinal Blindness (FRB) project, led by Professor Mark Gillies also from the Save Sight Institute. The FRB’s innovative free software platform—now in its sixth release—has expanded rapidly and collects real-world clinical data on macular degeneration patient outcomes from ophthalmologists throughout Australia, China, Europe and New Zealand. 

According to Prof Gillies “There is no other system quite so easy to use. Collecting baseline data on a patient takes just 30 seconds to enter, with follow-up appointments involving just 15 seconds of data-entry.”

Through the FRB system, the visual outcomes of 3,500 patients, 4,500 eyes, 65,000 visits and almost 80,000 treatments are currently being tracked in a completely anonymous way. This provides valuable insights regarding different treatment approaches and enables more clinicians to benchmark and continuously improve their own patient outcomes. 

Added to this, the program has real benefits for people living with macular degeneration. Says Prof Gillies “For patients, the simplified graphical outputs of their treatment journey helps them to understand the consequences of various treatment approaches, and is thought to be improving compliance”. 

The FRB project is a joint initiative by the Save Sight Institute in Sydney, the Centre for Eye Research Australia in Melbourne and the Lions Eye Institute in Perth.