Professor Mark Gillies, Sydney Eye Hospital and the University of Sydney, ssi.ssr@sydney.edu.au
The Save Sight Registries (SSR) System is a unique online platform designed to track and document real-world outcomes for the treatment of eye diseases through the collection, exchange and analysis of de-identified health data. The international SSR flagship project is the Fight Retinal Blindness! Registry, established in Australia in 2007. Through its research activities, SSR enables current and emerging therapies to be evaluated for patient safety, clinical efficacy and cost-effectiveness. Our reports are read by clinicians, researchers, policy makers, public health administrators and patient advocacy organisations seeking to improve health outcomes for patients with a range of eye conditions. In Australia, the SSR system has been successfully implemented in the private and public sector health care systems in all state and territories. Additionally, SSR has also expanded to other countries including New Zealand, Switzerland, Singapore, Belgium, France, Ireland, Italy, Spain, the Netherlands and the United Kingdom.
The primary objectives of SSR are three-fold:
- to provide a secure, web-based platform for clinicians to document high-quality clinical data on patient treatments outcomes
- to generate clinician specific analytics and reports for self-auditing
- to improve patient care through the establishment of benchmark standards of care for specific ocular conditions that can be treated with available and emerging treatments.
Patient population: Patients being treated for eye diseases including diabetic retinopathy, keratoconus, glaucoma, and ocular melanoma.
Outcomes measured: Visual acuity and treatment burden are two key indicators for the assessment of the efficacy of treatment, therapies and surgical interventions.
- Reported in other public reports
- Shared with clinicians
- Shared with consumers
- Commissioned reports and academic papers presented at scientific conferences and published in peer review journals
- FRB! system provides automated reports whereby doctors can ascertain their performance against the aggregated cohort, SSR does not provide feedback about treatment regimens to individual clinicians
- Impact of Vision Impairment (IVI) Questionnaire
- Keratoconus Outcomes Research Questionnaire (KORQ)
- Glaucoma Activity Limitation Questionnaire
- Glaucoma Ocular Surface Disease Index Questionnaire
Nil
For the sake of privacy of participating clinicians, we cannot provide a comprehensive list of participating sites. However, hospitals include:
- Sydney Eye Hospital, Australia
- Universitats Spital Zurich, Switzerland
- ADHB Auckland Hospital, New Zealand
- CHU de Dijon, France
- Hospital Clínic de Barcelona, Spain
- Amphia Ziekenhuis, Breda, The Netherlands
- Royal Free London NHS Foundation Trust, UK
- Fondazione IRCCS CA'GRANDA - Ospedale Maggiore Policlinico, Italy
- Singapore National Eye Centre, Singapore
South Eastern Sydney Local Health District HREC: 13/037,14/024