Episode 4: Dealing with Inherited Retinal Disease
06/11/24 • 67 min
This week I'm joined by special guest Associate Professor Lauren Ayton to discuss inherited retinal diseases.
One time not long ago, there was very little we could do to change the prognosis of inherited retinal diseases. People with Retinitis Pigmentosa. Choroideremia. Leber congenital amaurosis. Stargardt's disease. To name but a few. All conditions we previously monitored, and could only counsel on. But critical advances in research over the last decade now provide hope to people with such conditions.
Resources
- Retina Australia: https://retinaaustralia.com.au/
- An optometrist guide to the top candidate inherited retinal diseases for gene therapy: https://doi.org/10.1080/08164622.2021.1878851
- 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. https://www.scgh.health.wa.gov.au/Research/DNA-Bank
- 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. https://www.cera.org.au/research/venture-study/
- 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. https://www.sydney.edu.au/save-sight-institute/our-research/eye-genetics-inherited-retinal-diseases/inherited-retinal-diseases.html
- 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. https://www.lei.org.au/research/clinical-trials/the-western-australian-retinal-degeneration-ward-study-lions-eye-institute-retina-australia/
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This week I'm joined by special guest Associate Professor Lauren Ayton to discuss inherited retinal diseases.
One time not long ago, there was very little we could do to change the prognosis of inherited retinal diseases. People with Retinitis Pigmentosa. Choroideremia. Leber congenital amaurosis. Stargardt's disease. To name but a few. All conditions we previously monitored, and could only counsel on. But critical advances in research over the last decade now provide hope to people with such conditions.
Resources
- Retina Australia: https://retinaaustralia.com.au/
- An optometrist guide to the top candidate inherited retinal diseases for gene therapy: https://doi.org/10.1080/08164622.2021.1878851
- 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. https://www.scgh.health.wa.gov.au/Research/DNA-Bank
- 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. https://www.cera.org.au/research/venture-study/
- 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. https://www.sydney.edu.au/save-sight-institute/our-research/eye-genetics-inherited-retinal-diseases/inherited-retinal-diseases.html
- 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. https://www.lei.org.au/research/clinical-trials/the-western-australian-retinal-degeneration-ward-study-lions-eye-institute-retina-australia/
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Previous Episode
Episode 3: Age-Related Macular Degeneration
Episode 3: Age-Related Macular Degeneration
From the godmother of age-related macular degeneration research, this podcast touches on all the things a clinician diagnosing and monitoring AMD needs to know right now about this condition: how it affects a person, staging and recording it, past, current and new treatment, and potential emerging knowledge and innovations.
About our guest Professor Robyn Guymer: Robyn is the Deputy Director of CERA, the Head of Macular Research at CERA, and Professor of Ophthalmology at Melbourne University. She is also a senior retinal specialist at the Royal Victorian Eye and Ear Hospital. Learn more about Robyn at https://www.linkedin.com/in/robyn-guymer-am-6b498992/?originalSubdomain=au
A standout resource available for all things AMD related, for both clinicians and non-clinicians: https://www.mdfoundation.com.au
Robyn’s current clinical trials for AMD can be found at the Centre for Eye Research Australia: https://www.cera.org.au/current-trials/?
Prof. Robyn and A/Prof Lauren have created an e-learning course on AMD with the latest information on imaging tools, clinical biomarkers and management with the newest emerting treatments and technology. It has been designed specifically for primary eye care practitioners which can be found here: https://study.unimelb.edu.au/find/short-courses/age-related-macular-degeneration-for-primary-eyecare-practitioners/
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Next Episode
Episode 5: The Australian Bionic Eye Project
Associate Professor Penelope Allen is a leading expert in ophthalmology and a pivotal figure in the Australian Bionic Eye project. Join us as she delves into the fascinating journey of this initiative, from its inception and the brilliant minds behind it to the many challenges they have faced along the way. We'll also hear about the outcomes of the first and second clinical trials, offering hope and new possibilities for vision-impaired individuals.
To learn more about this project, visit:
Centre for Eye Research Australia https://www.cera.org.au/research/bionic-eye-and-vitreoretinal-research/
Bionics Institute https://rb.gy/p2t75w
Check out Channel 9’s recent news coverage (May 2024) of the 2nd clinical trials here
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