Save Sight Registries

Save Sight Registries lead the way in fighting the incidence of blindness globally by providing a scientific, web-based platform for eye specialists worldwide to capture high-quality clinical data on patient treatments and outcomes from routine clinical practice.

Save Sight Registries are immediately relevant to clinicians, researchers, public health providers and policy makers seeking to fight ocular blindness and improve patient outcomes in Australia and internationally.

The Registries' standardised dataset is compliant with international measurement tools for health outcomes and enables current and emerging therapies to be evaluated for clinical efficacy, cost-effectiveness and safety.

In a first of its kind in the world, the Save Sight Registries holds 10 years of data on ophthalmic treatment outcomes for neovascular (wet) Age-Related Macular Degeneration (wet AMD). As of March 2017, the equated to over 124,562 treatments captured in the database for approximately 7,200 patients and 9,067 eyes treated for wet AMD.

SSR Cycle

Under the Fight Retinal Blindness! project, clinicians worldwide can capture data for:

  • Neovascular Age-related Macular Degeneration (nAMD or "wet AMD")
  • Choroidal neovascularisation (CNV) other than nAMD
  • Diabetic Macular Oedema
  • Retinal Vein Occlusion

Under the Fight Corneal Blindness! project, clinicians are able to capture data for:

  • Keratoconus

Fight Corneal Blindness and Fight Tumour Blindness! projects are in development. It is anticipated that registries associated with these programs will be rolled out nationally in the coming year.

Privacy and Confidentiality

In Australia, all registries under the Save Sight Registries banner must be approved by local area health Human Research Ethics Committees. All private sites in Australia (i.e. private clinics/practices) are covered by an overarching Ethics approval issued by the Royal Australian and New Zealand College of Ophthalmology (Ref. nos. 09/73 and 50.14).

No patient name or contact details are recorded in the Registry database. Each patient is allocated a unique identifier by their treating clinician and only the clinician and delegated authority (for example, secondary treating clinician or practice administrator) have local access to the data.

All patient information entered in the Registry database is encrypted, transmitted and stored in a secure server at The University of Sydney, Australia. Patients cannot be identified individually to other clinics, entitites or authorities. All findings are reported against aggregated data outputs. Neither patients nor clinicians can be identified.

For concerns regarding the ethics approval process or related matters, please contact:
Professor Mark Gillies, Chief Invesitgator, Save Sight Registries
Telephone: +61 412 060 313