Fight Corneal Blindness!

The Fight Corneal Blindness! (FCB!) Project is a web-based registry designed to collect high quality outcomes data from patients in the clinical setting on the clinical effectiveness and safety of emerging therapies and surgical techniques on conditions that impair vision and cause blindness, such as keratoconus and corneal infection.

The FCB! Project is part of the Save Sight Registries and has key registries relating to corneal eye conditions.

Patient Progress, perspectives and engagement

By analyzing ‘real life’ data collected by the system, and through a consultative and collaborative process, patients and other stakeholders are informed of the clinical effectiveness of the different types of treatment approaches for ocular diseases.

Through the user-friendly platform, patients can engage with their treatment plan and monitor the effectiveness of their treatment. A graph generated by the system summarises a patients treatment journey, helping them to understand the outcomes of their treatment. The system tracks patient visual acuity and features of their keratoconus at each visit against their treatment .

Monitoring corneal cross-linking outcomes of keratoconus

This graph summarises a patient's treatment journey for their right eye (blue) and left eye (red) and visual outcomes (y-axis) over eight years (x-axis) whose keratoconus is being treated with corneal cross-linking

The FCB! Project runs patient and clinician education events to promote engagement.

Key Research Activities

Keratconus Registry

Keratoconus affects the eye by thinning the cornea, the eye’s window. The thinning causes the cornea to distort and bulge, becoming more cone-shaped, rather than the usual round shape. The end result can be significant loss of vision.

It affects 1 in every 2,000 people, with men and women equally affected. The exact cause is unknown. Initial symptoms are usually blurring and distortion of vision that may be corrected with glasses, and increased sensitivity to light. As the condition advances, vision may no longer be adequately corrected with glasses due to the high irregularity of the cornea.
Keratoconus typically affects both eyes but each eye may be affected differently. The condition causes severe visual impairment in 20% and as it typically affects young people has a significant public health impact.

The project will collect information regarding a particular treatment of keratoconus called cross-linking.

Cross-linking is a treatment aimed to prevent the progression of keratoconus. Cross-linking works by increasing collagen crosslinks in the cornea, which are the natural “anchors” within the cornea. These anchors are responsible for preventing the cornea from bulging out and becoming steep and irregular.

The cross-linking procedure involves saturating the cornea with riboflavin drops, which are then activated by ultraviolet light. This process increases the amount of collagen cross-linking in the cornea and strengthens the cornea.

Keratoconus versus normal cornea

Eye affected by keratoconus versus normal cornea

The Save Sight Keratoconus Registry is the the first module of the FCB! Project. Outcomes data includes Corneal Cross Linking (CXL), a new technique that utilises riboflavin and UVA to strengthen the cornea to reduce the risk of progression in keratoconus. The prevention of keratoconus progression lessens the need for corneal grafting in some patients (3).

Clinicians engaged with the FCB! Project form a network of experts working towards improving patient outcomes. Data from the registry is used for research to increase our understanding of the condition and analyse treatment trends. Evidence based guidelines can be formulated using registry data. Such guidelines will inform the order, timing and risk of delivering these treatments..

The FCB! Project offers clinicians the opportunity to audit their clinical data to comply with continuing professional development activities.

Funding and Partnerships

The Ophthalmic Research Institute of Australia (ORIA) provided seed funding, along with a generous donation from Mr Larry Korhauser (President, Keratoconus Australia), in memory of his mother, for the establishment of the Keratoconus Registry. In-kind funding from the University of Sydney’s flagship Fight Retinal Blindness! Project and Sydney Eye Hospital has ensured the growth of the project.

The registry has a national steering committee composed of corneal experts.

Key Contacts

Chief Investigator:

Professor Stephanie Watson
Email: stephanie.watson@sydney.edu.au
Telephone: +61 2 9389 0666

Project Manager:

Amparo Herrera-Bond
Email: amparo.herrerabond@sydney.edu.au

Registry information and support:

Email: SSI.SSR@sydney.edu.au
Telephone: +61 2 9382 7304


Publications

Watson S, Gunnasekara G, Go C, Kerdraon Y, Males J, Daniell M, Chan E, Knecht-Bosch M, Herrera-Bond A, Weston C, Garcia M, Bathelmes D, Gillies M, Efficient capture of high-quality data on the outcomes for corneal cross-linking for keratoconus: The Fight Corneal Blindess Project. Clin Exp Ophthalmol. 2015. 43 (Suppl 1): 48.

Watson S, Go C, Gunnasekara G, Herrera-Bond A, Kerdraon Y, Males J. Corneal cross-linking at Sydney Eye Hospital: Pilot evaluation of the Fight

Corneal Blindness module for corneal cross-linking. Clin Exp Ophthalmol. 2015 43 (Suppl 1): 86.

Tan J, Watson S. A review of clinical registries in ophthalmology. Clin Exp Ophthalmol. 2016. 44:93.

Go C, Watson S, Kerdraon Y, Males J, Petsoglou C, Kim P, Ball M, Moloney G, Herrera-Bond A, Nguyen V, Dinh A, Garcia M, Gillies M. Outcomes of corneal cross-linking from a large tertiary referral eye care centre. Clin Exp Ophthalmol. 2016. 44:90

Watson S, Daniell M, Chan E, Kerdraon Y, Males J, Morlet N, Beckingsale P, Mills R, Go C, Barthelmes C, Knecht-Bosch M, Herrera-Bond A, Nguyen V, Dinh A, Weston C, Garcia M, Gillies M. The Keratoconus module of the Save Sight Registries for efficient capture of high-quality data on the outcomes of corneal cross-linking for keratoconus. Clin Exp Ophthalmol. 2016. 44: 47-48

Presentations

Save Sight Registries: Making CPD easier! Stephanie Watson, Australian Society of Ophthalmologists Business Skills Expo 2017.

The outcomes of corneal cross-linking for Keratoconus form routine clinical practice across Australia and New Zealand: Results from the Save Sight Registries Keratoconus Module. Stephanie Watson, Mark Daniell, Elsie Chan, Yves Kerdraon, John Males, Nigel Morlet, Peter Beckingsale, Richard Mills, Chris Go, Daniel Barthelmes, Martina Knecht-Bosch, Amparo Herrera-Bond, Vuong Nguyen, Amanda Dinh, Courtney Weston, Marco Garcia, Mark Gillies. ARVO Baltimore USA 2017.

Tracking Treatment outcomes in Keratoconus: Save Sight Registries Keratoconus Module. Stephanie Watson. ARVO Asia, Brisbane 2017

Tracking Treatment outcomes in Keratoconus: Save Sight Registries Keratoconus Module. Stephanie Watson. APAO, Singapore 2017

Keratoconus Corneal Collagen cross-linking module. Stephanie Watson. ANZ Corneal Society, Brisbane 2017

The outcomes of corneal cross-linking for Keratoconus form routine clinical practice across Australia and New Zealand: Results from the Save Sight Registries Keratoconus Module. Stephanie Watson, Mark Daniell, Elsie Chan, Yves Kerdraon, John Males, Nigel Morlet, Peter Beckingsale, Richard Mills, Chris Go, Daniel Barthelmes, Martina Knecht-Bosch, Amparo Herrera-Bond, Vuong Nguyen, Amanda Dinh, Courtney Weston, Marco Garcia, Mark Gillies. RANZCO Annual Conference, Melbourne 2016

12 month outcomes of corneal cross-linking for Keratoconus from routine clinical practice across Australia and New Zealand: Results from Save Sight Registries Keratoconus module. Stephanie Watson, Chris Go, Yves Kerdraon, John Males, Mark Daniell, Elsie Chan, Martina

Knecht-Bosch, Amparo Herrera-Bond, Courtney Weston, Marco Garcia, Daniel Barthelmes, Mark Gillies. Rapid Fire Session. RANZCO Annual Conference, Melbourne 2016

Outcomes of corneal cross-linking from a large tertiary referral eye care centre. Go C, Watson SL, Yves Kerdraon, John Males, Con Petsoglou, Peter Kim, Matt Ball, Gerard Sutton, Greg Moloney, Amparo Herrera-Bond, Vuong Nguyen, Amanda Dinh, Marko Garcia, Mark Gilles. Poster session. RANZCO Annual Conference, Melbourne 2016

Orthoptists driving clinical improvements via the Save Sight Registries (SSR). Amanda Dinh, Amparo Herrera-Bond, Phuc Nguyen, Mark Gillies, Stephanie Watson. Orthoptics Australia conference 2016

Save Sight Registries. Watson SL. Business Skills Expo. Australian Society of Ophthalmologists. Sydney 2016

Corneal cross linking. 16th Malaysian Conjoint Meeting, Kuala Lumpar 2016

Corneal update. Watson SL. Synergeyes. Sydney 2016

Keratoconus Australia Information Session 2016 Presentation prepared by SSI, presented CERA Researcher Srujana Sahebjada
Efficient data capture of outcome data for corneal cross-linking. Watson SL. Poster. Gordon Research Corneal Conference. Ventura Beach, CA, USA 2016

Fight Corneal Blindness Project. Watson SL. Invited speaker. Corneal Society Melbourne 2016

Corneal Cross-linking: Just Do it? Watson SL. Invited speaker. ORIA symposium. RANZCO Annual Meeting, Wellington, New Zealand 2015

Corneal Cross-linking Audit. Watson SL. RANZCO Annual Meeting, Wellington, New Zealand 2015

Fight Corneal Blindness Project. Watson SL. RANZCO Annual Meeting, Wellington, New Zealand 2015

Keratoconus Australia Information Session Presentation 2015 prepared by SSI, presented CERA Dr Elsie Chan

References


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Kennedy RH, Bourne WM, Dyer JA. A 48-year clinical and epidemiologic study of keratoconus.

2.

Secretariat, Health Quality Ontario. Collagen cross-linking using riboflavin and ultraviolet-a for corneal thinning disorders: an evidence-based analysis. Ont Health Technol Assess Ser. 2011;11(5):1–89.

3.

Chan E, Snibson GR. Current status of corneal collagen cross-linking for keratoconus: a review. Clin Exp Optom. 2013 Feb 17;96(2):155–64.

4.

Abdelghaffar W, Hantera M, Elsabagh H. Corneal collagen cross-linking: promises and problems. British Journal of Ophthalmology. 2010 Nov 22;94(12):1559–60.

5.

Safety of UVA-Riboflavin Cross-Linking of the Cornea. 2007 May;26(4):385–9. Available from: http://content.wkhealth.com/linkback/openurl?sid=WKPTLP:landingpage&an=00003226- 200705000-00001

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American Journal of Ophthalmology. 1986 Mar 15;101(3):267–73.

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Kymes SM, Walline JJ, Zadnik K, Gordon MO. Quality of life in keratoconus. American journal of Ophthalmology. 2004 Oct;138(4):527–35.

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Kelly T-L, Williams KA, Coster DJ, Australian Corneal Graft Registry. Corneal transplantation for keratoconus: a registry study. Archives of Ophthalmology. 2011 Jun;129(6):691–7.

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Hovakimyan M, Guthoff RF, Stachs O. Collagen Cross-Linking: Current Status and Future Directions. Journal of Ophthalmology. 2012;2012(9):1–12.

10.

Corneal Cross linking. Ontario health technology assessment series. Pron G, Ieraci L, Kaulback K, Medical Advisory