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.
Patient Level
Graphs of long-term treatment outcomes and progression of eye diseases can be generated in real-time by clinicians and shown to patients.
Doctor or Practice Level
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
- It allows clinicians to conduct self-audits
- Improve patient flow
- Gain CPD points
Patient and the Health System
Encourages scientific collaboration and dissemination of key clinical findings
Testimonials
“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”
“There is a growing head of steam recognising the worth of FRB! as a tool to provide the ongoing outcome audit we so desperately need here”
“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!)”
“Thanks a lot for the interim report, which is very comprehensive and inspiring”
SSR Publications
| 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 | Retina | 2020 September | https://pubmed.ncbi.nlm.nih.gov/31613840/ |
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 | Retina | 2020 May | https://pubmed.ncbi.nlm.nih.gov/30821728/ |
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 | Ophthalmology | 2020 May | https://www.ncbi.nlm.nih.gov/pubmed/31932092 |
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 | Ophthalmology | 2020 March | https://www.ncbi.nlm.nih.gov/pubmed/31757494 |
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 | Cornea | 2019 October | https://www.ncbi.nlm.nih.gov/pubmed/31634230 |
Measurement of quality-of-life in keratoconus. | Cornea | 2019 October | https://www.ncbi.nlm.nih.gov/pubmed/31599780 |
The impact on work patterns of implementing the Save Sight Keratoconus Registry in the hospital setting. | Cornea | 2019 October | https://www.ncbi.nlm.nih.gov/pubmed/31577627 |
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. | Ophthalmology | 2019 July | https://www.ncbi.nlm.nih.gov/pubmed/30858022 |
Vision-Related Quality of Life in Keratoconus: A Save Sight Keratoconus Registry Study. | Cornea | 2019 May | https://www.ncbi.nlm.nih.gov/pubmed/30730335 |
Clinical Registries in Ophthalmology | Ophthalmology | 2019 May | https://www.ncbi.nlm.nih.gov/pubmed/30572076 |
Characterisation of poor visual outcomes of neovascular age-related macular degeneration treated with anti-vascular endothelial growth factor agents | Ophthalmology | 2019 May | https://www.ncbi.nlm.nih.gov/pubmed/30529685 |
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 | Ophthalmology | 2019 January | https://www.ncbi.nlm.nih.gov/pubmed/30149035 |
Ranibizumab and aflibercept for the treatment of pigment epithelial detachment in neovascular age-related macular degeneration: data from an observational study | Retina | 2018 October | https://www.ncbi.nlm.nih.gov/pubmed/28820848 |
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 | Ophthalmology | 2018 February | https://www.ncbi.nlm.nih.gov/pubmed/28993010 |
Incidence and outcomes of infectious and noninfectious endophthalmitis following intravitreal injections for age-related macular degeneration | Ophthalmology | 2018 January | https://www.ncbi.nlm.nih.gov/pubmed/28801117 |
Two Year Outcomes of “Treat and Extend” Intravitreal Therapy Using Aflibercept for Neovascular Age-Related Macular Degeneration | Retina | 2018 January | https://www.ncbi.nlm.nih.gov/pubmed/28145976 |
Re: Comparison of Age-Related Macular Degeneration Treatments Trials (CATT) Research Group, et al.: Five-year outcomes with anti-vascular endothelial growth factor | Ophthalmology | 2017 March | https://www.ncbi.nlm.nih.gov/pubmed/28219517 |
Seven-year trends in visual acuity at first | Ophthalmology | 2017 February | https://www.ncbi.nlm.nih.gov/pubmed/27596290 |
Twelve-month outcomes of ranibizumab vs. aflibercept for neovascular age-related macular degeneration. Data from an observational study. | Ophthalmology | 2016 December | https://www.ncbi.nlm.nih.gov/pubmed/27707549 |
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. | Ophthalmology | 2016 November | http://www.ncbi.nlm.nih.gov/pubmed/27554034 |
Long-term outcomes of treatment of | Ophthalmology | 2015 September | https://www.ncbi.nlm.nih.gov/pubmed/26096346 |
Two Year Outcomes of “Treat And Extend” Intravitreal Therapy for Neovascular Age-Related Macular Degeneration | Ophthalmology | 2015 June | https://www.ncbi.nlm.nih.gov/pubmed/25846847 |
Time to initial clinician-reported inactivation of neovascular age-related macular degeneration | Ophthalmology | 2015 March | https://www.ncbi.nlm.nih.gov/pubmed/25458197 |
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 | Ophthalmology | 2014 October | http://www.ncbi.nlm.nih.gov/pubmed/24939512 |
Reasons for discontinuation of intravitreal vascular endothelial growth factor inhibitors in neovascular age-related macular degeneration | Retina | 2014 September | https://www.ncbi.nlm.nih.gov/pubmed/24837049 |
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 | Ophthalmology | 2014 March | https://www.ncbi.nlm.nih.gov/pubmed/24290801 |
Efficient capture of high quality data on | Retina | 2014 January | https://www.ncbi.nlm.nih.gov/pubmed/23836194 |
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 |