ABOUT US
About the Save Sight Registries
OUR VISION
To reduce the incidence of blindness worldwide by conducting research into patient treatment outcomes.
WHO WE ARE
Real world evidence to reduce blindness worldwide
The Save Sight Registries are a web based platform that allows clinicians to record “real world” treatment outcomes for eye diseases. Designed by clinicians for clinicians, the system helps evaluate current and future treatments as they are released.
Our registries are relevant to clinicians, researchers, public health providers and policy makers working to fight blindness and improve patient outcomes in Australia and internationally. We are part of the Save Sight Institute at the University of Sydney.
1,000,000+
Visits recorded
59,372
Eyes tracked
54,969
Patients
29
Countries
OUR LEADERSHIP
The clinicians and researchers leading the Registries
Professor Mark Gillies
Chief Investigator and Innovator
MB BS, PhD, FRANZCO
Director of Research, Save Sight Institute, University of Sydney
Professor Daniel Barthelmes
Co Investigator and Innovator
MD, PhD, EMBA, FEBO, FMH
Director, Department of Ophthalmology, University Hospital Zurich and University of Zurich
Professor Stephanie Watson OAM
Co Investigator, Fight Corneal Blindness
BSc, MBBS, FRANZCO, PhD, GAICD, FARVO
Director, Save Sight Institute, University of Sydney
A/Professor Mitchell Lawlor
Co Investigator, Fight Glaucoma Blindness
B.Med M.Med. FRANZCO PhD
Dr Richard Symes
Co Investigator, Fight Uveitis Blindness
B.Med M.Med. FRANZCO PhD
Dr Rod O’Day
Co Investigator, Fight Tumour Blindness
DMedSci, MBBS (Hons), LLB (Hons), BSc, FRANZCO
Head of Ocular Oncology Research, Centre for Eye Research Australia
Professor Matthew Simunovic
Co Investigator, Fight Inherited Retinal Blindness
MB BChir PhD FRANZCO
Dr Caroline Catt
Co Investigator, Fight Childhood Blindness
BMedSci (Hons 1), BMBS, MMed, FRANZCO
OUR HISTORY
Built over more than fifteen years
The Registries track long term observational data on treatment outcomes in the general population. Without it, we would not know whether a treatment keeps working in the long term. Observational research is one of the fastest and most cost effective ways to improve outcomes at scale.
2008
Fight Retinal Blindness! is formed as a standalone application, with initial funding from NHMRC grants and the RANZCO Eye Foundation.
2010
FRB! is widely released as a web application.
2013
The first analysis using FRB! data is published, reporting 12 month outcomes in treatment naive eyes using data entered by 27 retinal specialists.
2014
A methods paper describing the development of the FRB! project is published in Retina.
2015
The wet AMD module is designated an ICHOM Certified Supplier. Mark Gillies chaired, and Daniel Barthelmes was part of, the team that developed the International Consortium for Health Outcomes Measurement (ICHOM) standard patient centred outcome measures for wet macular degeneration.
2016
A grant from the Macular Disease Foundation Australia helps FRB! expand globally, and the project is renamed the Save Sight Registries, ready for a growing list of registries tracking outcomes in other eye diseases.
2023
The flagship macular degeneration module is redeveloped so Users can track outcomes for both wet and dry (atrophic) macular degeneration.
Today
Seven registries track outcomes across retinal, corneal, glaucoma, tumour, uveitis, inherited retinal and childhood eye disease.
HOW WE WORK
Principles that guide the Registries
Clinician led
Designed by clinicians for clinicians, to answer the questions that matter in everyday practice and to evaluate new treatments as they are released.
Expert governance
Each project is governed by a steering committee of specialists, so it reflects the unique aspects of the condition it tracks.
Independent support
Funding has come from The Eye Foundation, the National Health and Medical Research Council, the Macular Disease Foundation, Roche and Bayer. All support is provided on a non binding basis, as a research or educational grant.
OUR REGISTRIES
Seven projects focused on the leading causes of visual impairment
Each project tracks a specific group of eye diseases and their treatment outcomes, and is overseen by its own steering committee.
Fight Retinal BlindnessWet AMD, other CNV, retinal vein occlusion, diabetic macular oedema and retinopathy of prematurity.→
Fight Glaucoma BlindnessGlaucoma, including outcomes of minimally invasive glaucoma surgery (MIGS).→
Fight Tumour BlindnessOcular melanoma.→
Fight Uveitis BlindnessUveitis and scleritis.→
Fight Inherited Retinal BlindnessInherited retinal diseases and their outcomes.→
Fight Childhood BlindnessChildhood eye conditions and their treatment outcomes.→
Fight Corneal BlindnessKeratoconus, including in optometry practices, and dry eye disease.→OUR COLLABORATORS
Working with leading eye research institutions
The flagship Fight Retinal Blindness! project was developed as a collaboration between the Save Sight Institute at the University of Sydney, the Centre for Eye Research Australia and the Lions Eye Institute.
It is now used in public and private settings across Oceania, Europe, Asia and Africa, with collaboration expanding as participation grows.