Registries offer insights which helps clinicians and institutions to improve the delivery of healthcare. They also act as a tool for pharmaceutical companies to gather evidence of their drugs’ effectiveness for approved indications and potentially new indications, thus encouraging further research.
Data collected by the Save Sight Registries provide benefits for our patients and other stakeholders.
Graphs of long-term treatment outcomes and progression of eye diseases can be generated in real-time by clinicians and shown to patients.
Reports charting patient progress (individual eyes treated) can be generated simply with the click of a button and enable clinicians to track real-time outcomes at the individual patient or clinic level
Encourages scientific collaboration and dissemination of key clinical findings
“From my perspective FRB! System has been a real God send. Without FRB! I would not be able to follow the progress (or lack of!) or audit the seemingly hundreds of patients who are under my care within the public system”
“This data is Gold! Thank you so much”
“Thank you very much for your comprehensive introduction to the FRB project…. The practical and scientific values of the project has become clear to us as well as easiness of data entry (just a few seconds!)”
|Publications Title||Journal||Date Published||Link|
Four-week outcomes of vascular endothelial growth factor inhibitors for neovascular age related macular degeneration
|Clinical and Experimental Ophthalmology||2020 October||https://pubmed.ncbi.nlm.nih.gov/32463528/|
Detrimental effect of delayed re-treatment of active disease on outcomes in neovascular age-related macular degeneration: the RAMPS study
|Ophthalmology Retina||2020 September||https://pubmed.ncbi.nlm.nih.gov/32446840/|
Efficacy and follow-up of anti-VEGF injections in diabetic macular edema in real-life practice at the Dijon university medical centre through the Save Sight Registries
|Journal Français d'Ophtalmologie||2020 September||https://pubmed.ncbi.nlm.nih.gov/32473741/|
Smoking status and treatment outcomes of VEGF inhibitors for neovascular age-related macular degeneration
Intraocular Pressure Changes and VEGF Inhibitor Use in Various Retinal Diseases: Long-Term Outcomes in Routine Clinical
|Ophthalmology Retina||2020 September||https://pubmed.ncbi.nlm.nih.gov/32574830/|
Changes in real-world treatment patterns for diabetic macular oedema from 2009-2019 and 5-year outcomes: data from the Fight Retinal Blindness! registry
|Clinical and Experimental Ophthalmology||2020 August||https://pubmed.ncbi.nlm.nih.gov/32383527/|
Prevalence and characteristics of macular atrophy in eyes with neovascular age-related macular degeneration. A study from a long term observational dataset: The Fight Retinal Blindness! Project
|British Journal of Ophthalmology||2020 August||https://www.ncbi.nlm.nih.gov/pubmed/31843790|
Twelve-month outcomes of intra-vitreal anti-VEGF agents for treatment-naïve neovascular age-related macular degeneration eyes: French data from the fight for retinal blindness! registry.
|Journal Français d'Ophtalmologie||2020 July||https://europepmc.org/article/med/32622633|
Ten-year outcomes of anti-vascular endothelial growth factor treatment for neovascular age-related macular disease: a single-centre French study
|Clinical and Experimental Ophthalmology||2020 July||https://www.ncbi.nlm.nih.gov/pubmed/32112667|
Assessing the accuracy of a large observational registry of neovascular age-related macular degeneration
Outcomes of cataract surgery in eyes with diabetic macular oedema. Data from the Fight Retinal Blindness! Project
|Clinical and Experimental Ophthalmology||2020 May||https://www.ncbi.nlm.nih.gov/pubmed/31885185|
Ranibizumab or aflibercept for diabetic macular edema: comparison of one-year outcomes from the Fight Retinal Blindness! registry
Five year incidence and visual acuity outcomes for intravitreal therapy in bilateral neovascular age-related macular degeneration – Fight Retinal Blindness (FRB!) project
|Retina||2020 April (epub)||https://www.ncbi.nlm.nih.gov/pubmed/32310628|
Treatment outcomes of ranibizumab versus aflibercept for neovascular age-related
Prevalence and risk factors for the
|Retina||2020 February (epub)||https://www.ncbi.nlm.nih.gov/pubmed/32073543|
Ten-year treatment outcomes of neovascular age-related macular degeneration from two regions
|American Journal of Ophthalmology||2020 February||https://www.ncbi.nlm.nih.gov/pubmed/31606444|
Psychometric properties of the Keratoconus Outcomes Research Questionnaire (KORQ): a Save Sight Keratoconus Registry study
Measurement of quality-of-life in keratoconus.
The impact on work patterns of implementing the Save Sight Keratoconus Registry in the hospital setting.
Type 3 neovascularisation (retinal angiomatous proliferation) treated with anti-vascular endothelial growth factor: real world outcomes at 24 months
|British Journal of Ophthalmology||2019 September||https://www.ncbi.nlm.nih.gov/pubmed/30504490/|
Trainee-led vs. specialist-led management of neovascular age-related macular degeneration. A registry-based study.
|British Journal of Ophthalmology||2019 August||https://www.ncbi.nlm.nih.gov/pubmed/30385435|
Outcomes of suspending VEGF inhibitors for neovascular age-related macular degeneration when lesions have been inactive for 3 months
|Ophthalmology Retina||2019 August||https://www.ncbi.nlm.nih.gov/pubmed/31281103|
Five-year real-world outcomes of occult and classic choroidal neovascularization: data from the Fight Retinal Blindness! Project
|American Journal of Ophthalmology||2019 August||https://www.ncbi.nlm.nih.gov/pubmed/30862501|
Keratoconus natural progression: A systematic review and meta-analysis of 11,529 eyes.
Vision-Related Quality of Life in Keratoconus: A Save Sight Keratoconus Registry Study.
Clinical Registries in Ophthalmology
Characterisation of poor visual outcomes of neovascular age-related macular degeneration treated with anti-vascular endothelial growth factor agents
A multi-country comparison of real world management and outcomes of polypoidal choroidal vasculopathy – Fight Retinal Blindness! Cohort
|Ophthalmology Retina||2019 March||https://www.ncbi.nlm.nih.gov/pubmed/31014698|
Projection of long-term visual outcomes based on initial treatment response in neovascular age-related macular degeneration
Ranibizumab and aflibercept for the treatment of pigment epithelial detachment in neovascular age-related macular degeneration: data from an observational study
A Pharmacoepidemiologic Study of
|Graefe’s Archive for Clinical and Experimental Ophthalmology||2018 October||https://www.ncbi.nlm.nih.gov/pubmed/30051312|
Outcomes and predictive factors after cataract surgery in patients with neovascular age-related macular degeneration: The Fight Retinal Blindness! Project
|American Journal of Ophthalmology||2018 June||https://www.ncbi.nlm.nih.gov/pubmed/29550186|
Outcomes in neovascular age-related macular degeneration when neovascular lesion activity uncertain: observational study
|Ophthalmology Retina||2018 June||https://www.sciencedirect.com/science/article/pii/S2468653017304219|
Real-world visual outcomes in patients with neovascular age-related macular
|Clinical and Experimental Ophthalmology||2018 May||https://pubmed.ncbi.nlm.nih.gov/29044979/|
Clinical and social characteristics associated with reduced visual acuity at presentation in Australian patients with neovascular age-related macular degeneration
|Clinical and Experimental Ophthalmology||2018 April||https://www.ncbi.nlm.nih.gov/pubmed/28842956|
Early and late retinal pigment epithelial tears following anti-VEGF therapy for neovascular age-related macular degeneration
Incidence and outcomes of infectious and noninfectious endophthalmitis following intravitreal injections for age-related macular degeneration
Two Year Outcomes of “Treat and Extend” Intravitreal Therapy Using Aflibercept for Neovascular Age-Related Macular Degeneration
Re: Comparison of Age-Related Macular Degeneration Treatments Trials (CATT) Research Group, et al.: Five-year outcomes with anti-vascular endothelial growth factor
Seven-year trends in visual acuity at first
Twelve-month outcomes of ranibizumab vs. aflibercept for neovascular age-related macular degeneration. Data from an observational study.
Effects of Switching from Ranibizumab to Aflibercept in Eyes with Exudative Age-Related Macular Degeneration
|British Journal of Ophthalmology||2016 December||http://www.ncbi.nlm.nih.gov/pubmed/26994110|
Treatment patterns and visual outcomes during the maintenance phase of treat and extend therapy for age-related macular degeneration.
Long-term outcomes of treatment of
Two Year Outcomes of “Treat And Extend” Intravitreal Therapy for Neovascular Age-Related Macular Degeneration
Time to initial clinician-reported inactivation of neovascular age-related macular degeneration
Outcomes of persistently active neovascular age related Macular degeneration treated with vegf Inhibitors: observational study data
|British Journal of Ophthalmology||2015 March||https://www.ncbi.nlm.nih.gov/pubmed/25249615|
Intravitreal Therapy in Bilateral Neovascular Age-Related Macular Degeneration
Reasons for discontinuation of intravitreal vascular endothelial growth factor inhibitors in neovascular age-related macular degeneration
Consequences of long-term discontinuation of vascular endothelial growth factor inhibitor therapy in the patients with neovascular age-related macular degeneration
|Acta Ophthalmologica||2014 April||https://onlinelibrary.wiley.com/doi/full/10.1111/aos.12417|
Comparison of Outcomes from a Phase 3 Study of Age-Related Macular Degeneration with a Matched, Observational Cohort
Efficient capture of high quality data on
Prospective Audit of Exudative Age-Related Macular Degeneration: 12-month Outcomes in Treatment-Naïve eyes.
|Investigative Ophthalmology and Visual Science||2013 August||http://iovs.arvojournals.org/article.aspx?articleid=2128922|