The Save Sight Keratoconus Registry
The Save Sight Keratoconus Registry (SSKR) is an online database tool that is enabling eye-carers track the progress of patients' corneas before and after crosslinking. It allows corneal surgeons to enter data securely about their patients' vision and the shape of their eyes and to monitor them over time.
The Keratoconus Registry is a world first and has the potential to be the most important keratoconus research project launched in Australia since the Australian Corneal Graft Registry opened in 1985. SSI developed the keratoconus registry as the first module for its web-based data collection system, the Fight Corneal Blindness (FCB) project. The FCB project is itself an offshoot of the Institute's Fight Retinal Blindness registry, which it developed eight years ago and which has led to world-leading outcomes for patients with retinal disease and macular degeneration
The specially developed SSKR registry module, will
- investigate and evaluate the clinical effectiveness, cost-effectiveness and safety of emerging therapies for the treatment of keratoconus.
- develop strategies to ensure the use of evidenced based guidelines in the management of keratoconus.
- for the first time, include patient-generated quality of life information relating to the post-crosslinking experience and wellbeing.
Keratoconus Australia strongly supports the SSKR.
Keratoconus Australia urges all patients to support the Keratoconus Registry by ensuring their corneal surgeon is submitting data concerning their crosslinking operation to the Registry. If your corneal surgeon does not submit your data to the registry, we suggest you ask why not. If they don't want to participate, we advise you to switch to a surgeon who will submit your data to the Registry project.
From a patient perspective, the key features of the keratoconus registry are that:
1. Patients will have a direct say in the governance of the Keratoconus registry. Keratoconus Australia has been given a position on the Advisory Committee along with two keratoconus patients
2. Patients will themselves respond to a quality of life survey as part of the registry data entry process. This will provide first person information on the impact of treatments on patient wellbeing for the first time in a keratoconus registry
3. A list of doctors participating in the registry will be available to patients to enable them to choose corneal surgeons for crosslinking who will share their data with the registry, who are benchmarking their own performance against national averages and best practice and who are theoretically adopting the safest and most effective crosslinking techniques as demonstrated by the registry data.
More long term evidence needed on crosslinking outcomes
The Association has repeatedly expressed concern about the lack of research and evidence to support the variety of protocols being used to perform corneal collagen crosslinking in Australia. Apart from the Dresden protocol, which has been shown to be largely safe and effective in small scale randomized clinical studies, there remains a serious lack of clear, reliable information for patients about the safety and effectiveness of the other procedures being used by ophthalmologists on Australian keratoconus patients.
Variations to the Dresden protocol include leaving the epithelium intact, swelling the cornea to crosslink thin corneas, accelerated crosslinking using higher power ultraviolet light for shorter periods etc. The long term effects of crosslinking and its durability remain unknown. Crosslinking is not a risk free operation. SSI acknowledges that serious complications including corneal oedema, microbial keratitis, corneal melting and perforation along with sterile corneal infiltrates have been reported following cross- linking.
Publications
Some of the research papers already published by the Save Sight Keratoconus Registry can be found here.