Save Sight Institute has launched the world’s first large-scale assessment of collagen cross linking, an increasingly common approach to treating the corneal eye disease, keratoconus.
This exciting new research is an extension of the Save Sight Registries initiative, an online platform established eight years ago to analyse real-life treatment outcomes across the world.
Collagen cross-linking to counter the progression of keratoconus is the third module to be added to the Save Sight Registries framework which is also analyses treatment outcomes for macular degeneration and diabetic retinopathy.
Save Sight Registries uniquely allows any clinician administering treatments and performing procedures to contribute, and the project already has ophthalmologists from across Australia, New Zealand, Europe, Asia and the United States of America participating.
“Collaboration is our most powerful tool in the fight against blindness” said Clinical Professor Stephanie Watson, who heads up the keratoconus module of the registry. “By working together and harnessing the huge amounts of available data, we can help more people who suffer from debilitating diseases such as macular degeneration, diabetic retinopathy and now keratoconus.”
Last month, Save Sight Registries released results to show that Australia achieves significantly better long-term patient outcomes than Europe or the United States when it comes to treating wet age-related macular degeneration.
Data from the registry showed that after six years the average Australian patient had vision that was as good as, or better than, their starting vision. In the USA patients only retained that vision for four years, compared with just two years in the UK.
These insights are helpful for deciding upon the most effective treatment regime for people. “Clearly what we are doing in Australia is working “ said Professor Mark Gillies, head of Save Sight Registries “and because of the registry, ophthalmologists from throughout the world can see exactly where the differences are.”
Save Sight Registries is an example of true collaboration in action. Specialist ophthalmologists from around the world are invited to participate, and patients and support groups such as Keratoconus Australia also have an active role in the project.
President of Keratoconus Australia, Mr Larry Kornhauser, attended the launch of the new module on Friday which will initially assess the outcomes of collagen cross linking for people affected by keratoconus.
“One of the most important aspects of this registry” said Mr Kornhauser “is its inclusion of patient reported outcomes. It is so critical to include those with the most at stake in the process, to ask them about their lived experience and to incorporate their responses in the overall assessment of treatment approaches.”
Keratoconus can have a significant impact on lives, particularly as it tends to appear during young adulthood. Michelle Urquhart is one such person who has struggled with eye disease throughout her life, addressing the audience at Friday’s launch event.
“It’s not been an easy road” said Michelle. “I was diagnosed as a teenager, and my world has often turned fuzzy as my eyesight fluctuated. I’ve felt very unsure about what the future held for me. I’ve had a few corneal grafts, a few serious infections, have been legally blind at times and have spent a considerable amount of time in hospital. I wasn’t always able to see the features of my beautiful babies. It’s been quite a journey for me, but I’m now benefitting from the amazing research already undertaken. This new phase is very exciting, and I know that the results from this registry will benefit many more people in the future.”
Eight years ago Prof Gillies instigated Save Sight Registries as a research tool with several key differences to randomised clinical trials.
“Registries track patient outcomes in the real world” said Prof Gillies. “Clinical trials tend to exclude certain patient groups, and are also conducted for a limited time frame with a limited number of patients. We track all patients over the long-term. It’s quick and easy for clinicians to use during routine consultations, taking just 15 seconds to enter patient data.”
Save Sight Registries allow eye doctors to audit their own patient outcomes, anonymously comparing results so that they can benchmark themselves with other clinicians. There is no cost to use the system, and all patient and doctor data is anonymous. Reports are easily generated in simplified graphical form to illustrate whether treatment approaches are working relative to the broader population of people affected by the same condition.
“Reports help clinicians anticipate how a prescribed treatment regime should work” said Prof Gillies “and these are increasingly becoming important communication tools to graphically show individual patients the consequences of not complying with particular treatment regimes”.
Patients, optometrists, clinicians and industry stakeholders attended the launch of the keratoconus module of Save Sight Registries on Friday. Presenters included Professor John McAvoy, Professor Mark Gillies, Clinical Professor Stephanie Watson and members of the Save Sight Registries team. Michelle Urquhart and Larry Kornhauser spoke on behalf of patients, and a panel of specialist corneal specialists answered audience questions on a wide variety of questions relating to keratoconus (Dr Yves Kerdraon, Dr John Males and Dr Con Petsoglou).