13 February, 2025
Talking Eyes with Lien Trinh
Guest speaker: Dr Tom Edwards
In this Talking Retina episode, Fixing the Code for Inherited Retinal Diseases, Lien has a very interesting chat with Dr Tom Edwards Head of the Retina Gene Therapy Research unit at the Centre for Eye Research Australia about:
- how gene therapy works
- his experience in treating patients with the one gene therapy called Luxturna, currently available to treat inherited retinal disease in Australia
- what’s involved in having the surgery and the positive results of the treatment
- the process from research to clinical delivery and,
- the importance of research participation to find new treatments.
According to Dr Edwards, multiple gene therapies are expected to roll out over the next 5 to 10 years, so genetic testing and signing up to registers is more important now than ever.
Resource background for Fixing the Code for Inherited Retinal Diseases
Dr. Tom Edwards and A/Prof Lauren Ayton work closely with the Australian and global community on Inherited Retinal Diseases.
Research sites specialising in IRDs in Australia are:
- The VENTURE Registry is a collaboration between the Centre for Eye Research Australia and the University of Melbourne which collects both clinical and genetic information on people living with IRDs in Victoria. This registry also includes female carriers of X-linked IRDs.
- The Australian Inherited Retinal Disease Register and DNA Bank is Australia’s largest DNA ban collecting family history and genetic samples, but not comprehensive clinical data (which is captured by state-based registries – below). The AIRDR has proudly been funded by Retina Australia since its inception in 2009.
- The Save Sight Institute IRD Registry is based in NSW and led by an ophthalmologist (Prof Grigg) and geneticist (Prof Jamieson), collecting both clinical and genetic data on people living with IRDs.
- The Western Australia Retinal Disease (WARD) study is based at the Lions Eye Institute in Perth, collecting clinical and genetic information on people with IRDs. The Lead Investigator, A/Prof Fred Chen, is also the Head of the Ocular Tissue Engineering Laboratory at Lions, developing new treatments for IRDs.
Additional resources can be found at:
- Retina Australia
Talking Eyes with Lien Trinh
Talking Eyes with Lien Trinh is a groundbreaking Australian podcast dedicated to exploring the latest advancements in eye research.
It translates these golden nuggets into tangible clinical practices, and help non-clinicians navigate their own interests in eye health and future possibilities.
Lien Trinh is a dedicated optometrist based in Darwin, who delivers eye care to communities across the Northern Territory. She is a passionate advocate for health equity and holistic eye health, and holds degrees in Optometry and Public Health. She founded podcast Talking Eyes to communicate to and support health practitioners deliver optimal eye care. The podcast started with goals to translate research, but has quickly evolved to become a reliable and engaging eye health resource for both consumers and practitioners alike.
https://retinaaustralia.com.au/podcast-fixing-the-code-for-inherited-retinal-diseases/
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