Helping those who suffer from rare eye diseases

In addition to the trauma and debilitation of eye disease generally, people with rare eye diseases often feel alone in an information void as the more common eye diseases grab the spotlight. Because of the rare incidence of some eye diseases, there is often little known about the condition, causes and treatment, and often there are no support networks, which exist for the more common eye diseases.This project is developing and operating a population-based active surveillance system to facilitate research into uncommon ophthalmological disorders; as such the ANZOSU is open to all Australian and New Zealand Ophthalmologists for conduct of research.

Objectives

Our specific aims are to:

• develop an efficient mechanism for accurately documenting the presentation of patients with specific uncommon conditions to ophthalmologists in Australia & New Zealand.
• facilitate further investigation of cases identified to collect demographic, epidemiological, clinical, treatment and outcome data.
• provide a mechanism for national collaborative research in ophthalmology.
• translate research findings to clinical practice through issuing updated diagnostic and management guidelines to the ophthalmic community.
• disseminate information acquired by the unit to guide appropriate prevention strategies and health resource allocation.

Medical team

The Australian and New Zealand Ophthalmic (Rare Diseases) Surveillance Unit team is led by Dr Richard Mills. Dr Mills’ scientific team will include representatives from all regions of Australia and New Zealand, and will be responsible for approving surveillance studies and ensuring they are of high quality. The scientific coordinator for this program can be contacted by email on info@anzosu.com

Project partners

Flinders University and Flinders Medical Centre (South Australia), and the Centre for Clinical Eye Research at the National Health and Medical Research Council.  A major and generous supporter of this project and the Eye Foundation is the Eye Surgery Foundation.

More information

If you would like more information about this project, contact us or visit the project website. To make a donation to support this project, click here.