Retina Reporter
Retina AustraliaÕs bi-annual newsletter, Summer 2025/2026

CONTENT
Message from the CEO
Strategic Plan 2026-2028
Message from the Chair
Retina Australia Awards
Research Grant Impact Report
2026 Research Grants 
World Geographic Atrophy Day
Research Project and Clinical Trial Register


Inaugural Retina Australia Awards and 2026 Research Grants 

Retina Australia proudly launched its inaugural Retina Australia Awards, introducing both a Hall of Fame and an Emerging Scientist Award. In addition, we have awarded two new research grants for projects commencing in 2026. These projects will explore innovative approaches to delivering potential treatments for inherited retinal diseases.


Article 1: Message from the CEO
It has been a busy six months wrapping up before the fast approaching end of the year. 

Inaugural Retina Australia Awards 2025
In August, we launched the inaugural Retina Australia Awards to recognise individuals whose outstanding achievements have made a positive impact on the lives of Australians affected by inherited retinal diseases. These Awards will be presented annually.

At our AGM in October, The Hall of Fame Award, selected by the Board, was awarded to Professor Michael Kalloniatis for his significant and sustained contribution to Retina Australia nationally and internationally. 
The Emerging Scientist Award, was presented to Dr Sena Gocuk, to foster the growth and development of her research in inherited retinal diseases, which has already demonstrated excellence, including her involvement in leadership and advocacy in the early stage of her career. She was awarded with $1,000 in prize money.

Research Grants Awarded for 2026
In November, as part of the Retina Australia Research Grants Program, we announced the two grants awarded for projects commencing in 2026. $60,000 was awarded to Associate Professor Raymond Wong for the project, ÒDevelopment of epigenetic reprogramming technology to treat retinal degenerationÓ and $57,912 was awarded to Associate Professor Mohit Shivdasani for the study, ÒSelective Activation of Retinal Bipolar Cells Using Freeform Electrical StimulationÓ. Both are innovative new investigations that address the urgent need to find treatments for inherited retinal diseases.
You can read about the Retina Australia Awards and Research Grant awardees in detail later in this newsletter.

Second treatment for geographic atrophy (GA) approved in Australia
Retina Australia welcomed the Therapeutic Goods AdministrationÕs (TGA) approval of IZERVAYª (avacincaptad pegol) in October, the second treatment for geographic atrophy (GA) in under a year. This new option, developed by Astellas Pharma Australia, joins Apellis PharmceuticalsÕ SYFOVRE¨ (approved in January), in offering hope to over 75,000 Australians living with GA by helping to slow vision loss and supporting independence and better quality of life.

Raising awareness
Raising awareness for inherited retinal diseases continued with the World Retina Day campaign, kindly sponsored by Specsavers, and attendance at the Optometry Clinical Conference, Specsavers Clinical Conference, Vision 2020 Australia Parliamentary Friends event in Canberra, the IRD Patient & Family Engagement Day, and the RANZCO Congress 2025. These events gave us the opportunity to meet with people affected by inherited retinal diseases, industry partners, community organisations, and eye health professionals who provide essential care and support. These valuable connections have strengthened awareness of inherited retinal diseases and of Retina Australia, resulting in increased referrals for those who need our assistance along with the fostering of collaborative partnerships.

Farewell and best wishes
Serving as the Chief Executive Officer of Retina Australia has been both a personal honour and a deeply meaningful professional privilege. Over the past three years, together with our dedicated staff and board, we have achieved significant milestones, doubling our reach and amplifying our impact for individuals and families affected by inherited retinal diseases. I am immensely proud of the progress we have made in continuing to fund life-changing research, strengthening our information, education and support services, advocacy efforts, and growing public awareness. I am continually inspired by the strength, resilience and courage of the patient community. Your stories, advocacy, and unwavering hope have shaped the heart of this organisation. 
As I step down from this role, I do so with great confidence in Retina AustraliaÕs future. With the Strategic Plan for 2026Ð2028 now in place, and strong governance and operational foundations established, the organisation is well-positioned to continue its vital work. I am proud to have contributed to building a solid platform from which Retina Australia can grow and thrive, and believe it will continue to uphold the values of excellence, integrity, respect, collaboration, and most importantly, being patient-centred. It has been a special opportunity to lead Retina Australia, and I extend my heartfelt thanks to all who have supported me throughout this journey. I look forward to seeing the continued success and impact of Retina Australia in the years ahead.

Warmest regards,
Julia Hall
Chief Executive Officer


Article 2: Strategic Plan 2026-2028

Strategic pillar 1 Ð Research
Strategic goal: To fund, participate, facilitate, and advocate for high quality research into the detection, prevention, and finding treatments and cures for inherited retinal diseases
Expected Outcomes: 
* New IRD research discoveries and advancements are made in the areas of detection, prevention, and finding treatments and cures 
* More funding is dedicated to IRD research to accelerate the progress, particularly in new treatment discovery 
* Increased clinical trials in Australia provide greater opportunity for early access to potential new treatments 
* Discovery and access to new treatments to stop vision loss is expected to improve the quality of life for those living with an IRD 

Strategic pillar 2 Ð Information & Education
Strategic goal: To be the primary source of trusted, accessible information and education on inherited retinal diseases, expanding public and professional awareness
Expected Outcomes: 
* People living with IRDs will have the knowledge to better understand, manage and plan for their condition including making decisions about genetic testing, potential treatments and ongoing care 
* People newly diagnosed will be better able to adapt and thrive by being well informed and supported 
* Information to family and carers is expected to assist in their preparedness and enable better care for those with IRDs 
* Health care professionals will be better informed about IRDs enabling improved patient disease management 
* Health care professionals will be confident to refer patients to Retina Australia for information on IRDs resulting in increased reach and impact 

Strategic pillar 3 Ð Support
Strategic goal: To provide individuals and families affected by inherited retinal diseases with reliable guidance, opportunities for peer connection, and referrals to support and specialist services
Expected Outcomes: 
* People living with IRDs will know where to find the resources they seek about their condition, and support and specialist services to enable better management of their conditions and daily living with low vision and blindness 
* Prevention of mental health issues and/or loneliness with improved health and wellbeing through peer support, and social connection via activity and event participation 

Strategic pillar 4 Ð Advocacy and Awareness
Strategic goal: To elevate awareness of IRDs and amplify the voices of those affected to influence policy, funding and health system decisions
Expected Outcomes: 
* Greater public understanding of IRDs as serious progressive conditions 
* Increased referrals and earlier diagnosis due to improved awareness 
* Government action to reflect patient needs. This may include funding support, access to programs and medicines/treatments. 
* Retina Australia will continue to grow its public profile and trusted brand to attract supporters and stakeholders 

Strategic pillar 5 Ð Sustainability
Strategic goal: To ensure the long-term financial, operational and reputational sustainability of Retina Australia
Expected Outcomes: 
* Ongoing investment into medical research will continue research developments into the detection, better treatments, and prevention of IRDs 
* People living with IRDs, their families and carers, will remain supported and benefit from the ongoing information, education, advocacy and support from Retina Australia 
* Financial risk of the organisation shall be managed, governed and where appropriate, minimised 

Strategic pillar 6 Ð Governance
Strategic goal: To strengthen organisational governance to ensure transparency, accountability and effective decision-making
Expected Outcomes: 
* The highest standards of integrity, excellence & organisational governance will be maintained 
* Governance risks minimised 
* Business risks minimised 
* Reputation risk minimised 
* Strategic goals will be met and adapted to reflect changing conditions where needed 
* All regulatory requirements are met 
* The Research Grants Program remains independent and selects the highest quality of research for funding 



Article 3: Message from the Chair
As you may be aware, Julia Hall, our inaugural Chief Executive Officer, will be leaving Retina Australia at the end of the year. On behalf of the members and the Board, I would like to thank Julia for her significant contribution during her three years with us.

Under JuliaÕs leadership and guidance, Retina Australia has developed into an effective national membership organisation representing all those affected by inherited retinal disease throughout Australia. Her professionalism, dedication and enthusiasm for the role has laid a strong foundation for the future of the organisation.

During her time with Retina Australia, Julia has made a highly positive impact by establishing a clear direction for the organisation. She has also had significant influence across the sector, including developing valuable and effective partnerships and collaborations with key researchers, pharmaceutical companies, trusts and foundations, corporates and with other organisations across the blind and low vision community.

Through her strategic insights and innovative ideas, Julia established an Information and Communications Strategy that included the publication of a revamped biannual newsletter the ÒRetina ReporterÓ and regular electronic newsletters, the ÒRetina InsiderÓ, as well as being instrumental in launching a modern and accessible website.

As a result of JuliaÕs endeavours, in particular with her good financial management and attention to detail, Retina Australia is now in a sound financial position. This has enabled the highly sought after Retina Australia Research Grants program to continue to fund innovative research each year and ongoing support to be provided to those managing the challenges of inherited retinal diseases.

I would like to wish Julia all the very best for her future endeavours and trust that she will find fulfilment in whatever pathway she chooses, be it in employment, or with her family and leisure activities. Thank you, Julia, for giving so freely of your time, over and above the expectations of a Chief Executive Officer, for your unwavering support to improving the quality of life for all those living with inherited retinal disease.

Leighton Boyd AM 
Chair, Retina Australia


Article 4: Retina Australia Awards

Retina Australia Hall of Fame Awards 2025
Professor Michael Kalloniatis
At our recent AGM, Retina Australia was proud to announce the inaugural recipient of its Hall of Fame Award. This Award recognises a Retina Australia member, researcher, volunteer, or other member of the community, who has made a significant and sustained contribution to Retina Australia nationally or internationally, and a positive impact on the lives of Australians with inherited retinal disease.

The 2025 Retina Australia Hall of Fame awardee is Professor Michael Kalloniatis BSc(Optom), MSc(Optom), PhD, GCOT, FAAO.


Professor Kalloniatis was a past grant recipient of Retina Australia and received his first research grant of $6,000 in 1992. Since then, whilst maintaining his clinical work as an optometrist, he has contributed to research into inherited retinal disease, leading various teams of researchers in laboratories in Australia and overseas. 

Between 1992 & 2008 he received 14 grants for research into inherited retinal disease enabling him to lead various teams of researchers, establish animal models of retinal dystrophy and a visual psychophysics laboratory.
He has shared his knowledge of inherited retinal diseases through working as a lecturer at the Universities of Melbourne, Auckland, New South Wales, Deakin and Houston. He is currently a professor in the College of Optometry, University of Houston and holds an Adjunct Professorship at UNSW and is an Affiliate Professor at Deakin University continuing his clinical teaching to optometry students and his research activities.

As well, Professor Kalloniatis has mentored many students who have been successful in achieving their PhDs in inherited retinal disease-related studies, and who have continued to work in the field.

He was invited to join the Retina Australia Scientific and Medical Advisory Committee in September 2009 and since then has represented Retina Australia internationally at Retina International Scientific meetings from 2010 until 2024, and provided advice to the Board about global research and potential treatments.

Professor Kalloniatis was instrumental in setting up the New Zealand National Eye Centre, which opened during 2008 and from 2009 to 2022 he was Director, Centre for Eye Health, University of New South Wales. Throughout his career, he has taught a significant number of optometry students and continued his own clinical practice which has had a positive impact on many Australians and New Zealanders who have been diagnosed with, and sought advice about, inherited retinal disease.

He has certainly upheld the mission and values of Retina Australia throughout his over 30 years affiliation with our organisation, during which time he has provided sage advice and been a staunch advocate of our work.

Professor Kalloniatis accepted the Award at the Retina Australia Annual General Meeting. ÒI am deeply honored and humbled to be the inaugural recipient of the Retina Australia Hall of Fame Award,Ó Kalloniatis said. ÒThis recognition is a personal milestone and a reflection of the many individuals who have worked alongside me in the laboratory and in the clinic. I share this honor with colleagues, past and present students, and postdoctoral fellows.Ó

Retina Australia Emerging Scientist Award
Dr Sena Gocuk
The Emerging Scientist Award supports the growth and development of early-career researchers in inherited retinal disease (IRD). Promoted across Australia, the Award attracted a highly competitive field of exceptional applicants. Following a rigorous national selection process, the Emerging Scientist Award for 2025 was awarded to Dr Sena Gocuk. 

Dr Gocuk demonstrated excellence in research, leadership and advocacy as an early career researcher, and clearly indicated her ability to develop her own esearch direction, lead and influence others to support her work, and used several communication strategies to promote the research that she has a strong passion for.

Dr Gocuk is an optometrist and postdoctoral research fellow at the Centre for Eye Research Australia (CERA) and The University of Melbourne. She is a part of the Retinal Gene Therapy Unit at CERA and the Vision Optimisation Unit in the Department of Optometry of Vision Sciences. Her research focuses on clinical and epigenetic mechanisms specialising in retinal conditions, with a particular focus on IRDs. Dr GocukÕs research unravelled correlations between clinical phenotype, genetics, and epigenetic mechanisms to investigate impact of disease in female carriers of IRD.

Pioneering a groundbreaking 10-year longitudinal study in collaboration with The University of Oxford and Anglia Ruskin University (Cambridge), she investigated changes in retinal characteristics among female choroideremia carriers. Her research has earned her the University of Melbourne DeanÕs Award for Excellence in Graduate Research, as well as the distinguished Ezell Fellowship Award presented by the American Academy of Optometry.
Dr Gocuk has become an advocate for female carriers of X-linked IRDs, speaking at conferences, support groups, and meetings to provide research updates and to promote the inclusion of female carriers in upcoming gene therapy interventions. Dr Gocuk continues investigating disease mechanisms, novel biomarkers of retinal disease, and retinal gene therapy potential for female carriers.


Article 5: Research Grant Impact Report 
Retina Australia is pleased to report on a Research Grant awarded in 2024 which was completed in June 2025.

Characterising Stargardt Disease Mutations for Splice Intervention Therapeutics
Chief Investigator: Dr Di Huang - Lions Eye Institute
Co-Investigator: Associate Professor Fred Chen - Lions Eye Institute
2024 Grant - $60,000 

Project Aim
Stargardt disease is the most common form of inherited macular degeneration. It differs from other inherited retinal diseases like retinitis pigmentosa, as it primarily affects the centre of the retina, in a region known as the macula. This means that it affects central vision (reading, face recognition etc), and generally does not affect side vision as much. It is caused by changes in a gene called ABCA4. These changes interfere with how the gene works and how its message is read in the body, which can prevent eye cells from functioning properly.
This research aimed to understand how these gene changes damage the eye and to explore a new type of treatment. This potential treatment uses small molecules (called antisense oligonucleotides) to ÒpatchÓ the geneÕs message and help it be read correctly. This could allow the gene to work better and slow or prevent vision loss.
The project had two main goals:
1. Find faulty versions of the ABCA4 gene that interfere with how the geneÕs message is processed.
2. Develop and test small molecules (antisense oligonucleotides) that can correct these mistakes.


Project Summary 
* The project studied cells from 30 patients with Stargardt disease and found that nearly 70% had gene changes that disrupted how the geneÕs message is processed. Some changes led to incorrect messages; others caused the message to break down before it could be used. These issues can prevent the gene from doing its job in the eye.
* The researchers used skin cells from selected patients and converted them into stem cells, a type of cell that can be grown into other types of cells, including eye cells. This gave them a powerful tool to study the disease more closely and test treatments directly in cells affected by the patientsÕ specific mutations/ gene changes. 
* They designed and tested small molecules known as splice-switching antisense oligonucleotides (SS-AONs). These are like patches that help fix how the gene's message is read by the body. Think of them like correcting a sentence so that it makes sense again.
* They added these molecules to patient cells in the lab. After treatment, the gene message was restored to more normal levels, meaning the patch had worked and the cells were better able to process the ABCA4 gene correctly.
* Based on computational predictions, the team designed targeted SS-AONs to correct the faulty gene message. 
* When tested in patient-derived cells, these molecules effectively restored the full-length, correct version of the gene message, demonstrating the potential of this approach to correct the underlying genetic defect.

Impact
Together, the teamÕs findings validate splice correction as a viable therapeutic strategy for Stargardt disease and lay essential groundwork for the development of personalised, gene-based treatments. 
This research not only advances our understanding of how specific gene mutations contribute to inherited vision loss but also creates a scalable model for testing future therapies, bringing us a step closer to the first targeted treatment for Stargardt disease and offering broader insights into treating other inherited retinal disorders.

Special thanks to the Perth Eye Foundation for co-funding this project with Retina Australia



Article 6: 2026 Research Grants
Retina Australia is delighted to support two new Research Grants in 2026 with the following researchers and their projects awarded for the coming year.

Project 1: Development of epigenetic reprogramming technology to treat retinal degeneration 
Chief Investigator - Associate Professor Raymond Wong, Centre for Eye Research Australia, University of Melbourne
Grant awarded - $60,000 (2026)

Project Aim
This project aims to create a new way to "rejuvenate" cells using epigenetics reprogramming. The study will test if this new method can be used as a gene therapy to stop vision loss in animals. 

Project Summary
Recent reports have demonstrated the use of Ôepigenetic factorsÕ to change the specific tags in DNA and turn the cells back to a younger state. This rejuvenation helps the cells better project themselves from diseases and injuries. This new epigenetic reprogramming approach holds incredible promise for preventing vision loss caused by retinal degenerative diseases. 
In this project, the researcher will assess the therapeutic potential of epigenetic reprogramming in the retina and test its application to treat retinal degeneration (i.e. retinitis pigmentosa). Notably, they will use the clinically approved retinal gene delivery method with viruses to deliver the epiegenetic factors for testing. This will maximise the potential of translating our research findings to the clinic.

Expected Outcomes
This project will provide the first proof-of-concept evidence to support epigenetic 
reprogramming to ÔrejuvenateÕ the retina. This project is expected to generate the critical preclinical data for further development of a novel gene therapy to treat blindness caused by loss of photoreceptors. 

Project 2: Selective Activation of Retinal Bipolar Cells Using Freeform Electrical Stimulation
Chief Investigator - Associate Professor Mohit Shivdasani, University of New South Wales 
Grant awarded - $57,912 (2026)
Project Aim
This project explores a new method called freeform electrical stimulation to restore vision in people with inherited retinal diseases (IRDs). Unlike current technologies that target retinal ganglion cells, this approach aims to stimulate bipolar cells, which are crucial for processing visual signals. Experts believe this could lead to clearer, more natural vision. If successful, it could pave the way for next-generation vision restoration devices capable of high-resolution sight, enabling people to recognise faces, read, and navigate confidently.

Project Summary
To test this new vision-restoring technique, researchers will combine lab experiments with computer simulations. In the lab, they will study how individual cells in the retina respond to specially shaped electrical signals. At the same time, they will use a detailed virtual model of the human retina to explore how these signals affect different layers of the eye.
This combined approach will help identify the best way to activate bipolar cells safely and effectively, even in eyes affected by disease. The findings will lay the foundation for creating advanced devices that could restore sharp, natural vision for people with inherited retinal conditions.

Expected Outcomes
By the end of the project, the researchers expect to have strong lab and computer-based evidence showing how to control these cells to improve vision. They will also explore how well this works at different stages of vision loss and confirm that the technique does not damage the eye. These findings could lead to the development of next-generation vision-restoring devices for conditions like retinitis pigmentosa, offering people the chance to see more clearly and naturally.



Article 7: World Geographic Atrophy Day

A New Era of Hope for Vision Preservation
Geographic Atrophy (GA), a progressive and irreversible form of advanced age-related macular degeneration (AMD). Affecting over 75,000 Australians, GA gradually erodes central vision, impacting independence, mobility, and quality of life. 

On World Geographic Atrophy Day, 5 December 2025, Retina Australia invites you to join us in raising awareness and supporting those affected by this condition. This yearÕs campaign is especially significant, as Australia now has two approved treatments for GA, marking a historic turning point in eye health care. 

About GA
* GA causes the gradual death of retinal cells in the macula, the part of the eye responsible for sharp, central vision. 
* This can cause progressive central vision loss which leads to difficulty reading, recognising faces, and seeing in low light. It can also lead to blurred or distorted central vision, and/or visual distortions such as blind spots. 
* Many people do not notice symptoms until significant vision loss has occurred. 
* The severity of the visual disability associated with GA is evidenced by the median time to progression to legal blindness estimated at 6.2 years.
Symptoms and progression can vary from person to person.

Risk Factors
Several risk factors can increase your likelihood of developing GA:
* Adults over 50 years old
* People with a family history of GA and age-related macular degeneration (AMD)
* Smokers and those with poor diet
* Individuals with high exposure to UV light without eye protection 
* Inflammation in the retina

How Is GA Diagnosed?
GA is diagnosed through a comprehensive retinal examination by an optometrist or ophthalmologist, which may include: 
* Optical Coherence Tomography (OCT) to visualise retinal layers
* Fundus autofluorescence imaging to detect areas of cell loss
* Visual acuity tests to assess central vision 
Because GA can be asymptomatic in its early stages, regular eye examinations are essential, especially for older adults and those at risk of AMD. Early detection allows for timely diagnosis and monitoring, supporting informed decisions about treatment and lifestyle changes that may help slow disease progression.



New treatments available for the first time
Two treatments for GA have now been approved by the Therapeutic Goods Administration (TGA) in Australia. These treatments do not restore lost vision but offer hope by slowing disease progression, giving patients more time to enjoy everyday activities like reading, driving, and seeing loved ones. 
* SYFOVRE¨ (Pegcetacoplan, Apellis Pharmaceuticals) Ð approved January 2025
* IZERVAYª (Avacincaptad pegol, Astellas Pharma) Ð approved October 2025
While these treatments are approved for use in Australia, they are not yet subsidised under the Pharmaceutical Benefits Scheme (PBS). That means they remain financially out of reach for many Australians. Timely access is everything. Once vision is lost, it cannot be restored.
Listing of GA treatments on the PBS would: 
* Make treatment affordable and accessible
* Support equitable care across clinics
* Empower patients to maintain independence and quality of life
* Encourage continued research and innovation 

Get involved
We invite you to take part in World Geographic Atrophy Day and help raise awareness about GA. HereÕs how you can get involved:
* Learn About GA. Take time to understand what GA is, the common symptoms, how it progresses, and its impact on vision. Stay alert to any changes in your eyesight. You can explore more information on our website at retinaaustralia.com.au.
* Have Your Eyes Checked. Regular eye examinations are vital, especially for older adults and those at risk of age-related macular degeneration (AMD). Early detection can lead to timely intervention and better management.
* Spread the Word. Share this message, talk to friends and family, help raise awareness, share your story and advocate for PBS access. 
By coming together to raise awareness, we can build a more informed and supportive community, empowering individuals to take charge of their vision health.

World GA Day Exclusive Sponsor - Astellas


Article 8: Research Project and Clinical Trial Register
The IRD Research Project and Clinical Trial Register aims to provide information about research projects and clinical trials in inherited retinal diseases. This Register is for informational purposes only, and further details can be sought via the email contacts. The following listing summarises some key projects currently open for participant recruitment. For more detail on each project, refer to our website at: retinaaustralia.com.au/inherited-retinal-disease/ird-research-project-and-clinical-trial-register/

Sponsored post
A phase I/II dose-escalating study of the safety, tolerability and efficacy of KIO-301 administered intravitreally to patients with retinitis pigmentosa and choroideremia (ABACUS) Ð Substudy - Sponsor: Kiora Pharmaceuticals Pty Ltd
Disease: Retinitis Pigmentosa (RP) or Choroideremia (CHM) Participants: Patients
This study aims to evaluate the use of specialised tasks to assess vision in individuals with profound vision loss due to RP or CHM. 
Recruiting: South Australia Contact: Melanie.Willoughby@sa.gov.au

Sponsored post
An Observational Clinical Trial of PRPF31 (RP11) - Sponsor: PYC Therapeutics
Disease: Retinitis pigmentosa Participants: Carriers, Patients
This study aims to observe the progression in patients with the inherited retinal disease (IRD) retinitis pigmentosa 11 (PRPF31 or RP11) over the period of four years.
Recruiting: Centre for Eye Research Australia, East Melbourne, Victoria and LionÕs Eye Institute, Western Australia. Contact: quokka@lexitas.com

EPIC-Vision: The Economic and Psychosocial Impacts of Caring for Families Affected by Visual Impairment - Sponsor: Macquarie University
Disease: Stargardt disease, Usher Syndrome, Leber congenital amaurosis (LCA), Retinitis pigmentosa, Choroideremia, Cone-rod dystrophy (CRD), X-linked retinoschisis, Cone dystrophy and achromatopsia, Leber hereditary neuropathy Participants: Parents and Guardians, Patients
This study examines the economic and social effects of inherited retinal disease (IRD) and the benefits of genetic testing for diagnosis and access to new therapies. Participants will complete two detailed questionnaires 12 months apart. Partners and children may also participate with shorter questionnaires. Surveys can be conducted in person, by phone, or via video call.
Recruiting clinics:
* NSW Ð Ophthalmic Clinics at Sydney Eye Hospital, Save Sight Institute and The ChildrenÕs Hospital at Westmead
* VIC Ð The Royal Victorian Ear and Eye Hospital, The University of Melbourne, Centre for Eye Research Australia
* WA Ð LionÕs Eye Institute, Perth ChildrenÕs Hospital
* New Zealand Ð Greenlane Clinical Centre, Eye Department, Te Toka Tomai
If you are a patient at any of the above recruiting clinics and are interested in participating in the study, please discuss with your ophthalmologist.

Exploring therapies for those who have none - Sponsor: Perron Institute for Neurological and Translational Science
Disease: All rare genetic retinal diseases with no current treatments 
Participants: Family Members, Patients 
The study will provide a genetic diagnosis by identifying specific changes in the patientÕs DNA, confirm what is causing the disease, and explore new treatments using our three decades of experience with a type of drug called Antisense oligomers. These drugs could help to restore normal gene function. 
Recruiting: Tasmania, WA, Victoria, NSW Contact: MolecularTherapy@murdoch.edu.au

Improving vision sensitivity testing in inherited retinal diseases - Sponsor: Centre for Eye Research Australia and the University of Melbourne 
Disease: Choroideremia, Retinitis Pigmentosa (associated with RPGR or USH2A), Stargardt disease Participants: Patients
This study aims to further understand how a novel outcome measure known as the Full-Field Stimulus Test (FST) can be optimised for use in clinical trials for retinal diseases. The test measures the lowest level of light that a person can see in the dark, and aims to improve how vision changes are assessed in clinical trials.
Recruiting participants in Victoria. Contact: IRD@groups.unimelb.edu.au

Investigating the genetic basis of undiagnosed inherited retinal diseases -Sponsor: Centre for Eye Research Australia and the University of Melbourne
Disease: All Inherited Retinal Diseases Participants: Patients
This research aims to uncover new genetic causes of inherited retinal diseases (IRDs) by studying people with a confirmed IRD but inconclusive previous genetic results. Participants will have a research eye examination and provide a blood sample for genomic sequencing. The goal is to improve diagnosis and future treatment options.
Recruiting: Victoria. Contact: IRD@groups.unimelb.edu.au

The Victorian Evolution of Inherited Retinal Diseases Natural History Registry (VENTURE) Study - Sponsor: Centre for Eye Research Australia, University of Melbourne
Disease: All inherited retinal diseases Participants: Carriers, Patients, Family
The VENTURE registry collects retrospective and prospective clinical and genetic information from people living with an inherited retinal disease. 
Recruiting: Victoria. Contact: IRD@groups.unimelb.edu.au

The Australian Inherited Retinal Disease Register (AIRDR) and DNA Bank 
- Sponsor: Sir Charles Gairdner Hospital, Perth, Western Australia
Disease: All inherited retinal diseases Participants: Carriers, Patients, Family
The primary aim of the AIRDR is to characterise the genetic spectrum of IRDs in the Australian population in order to guide research into treatments and cures for IRDs.
Recruiting: Australia wide. Contact: SCGHMTP@health.wa.gov.au

Save Sight Institute IRD Registry - Sponsor: The University of Sydney, NSW
Disease: All inherited retinal diseases Participants: Carriers, Patients, Family
IRD management involves detailed ophthalmic structural and functional assessment.
Recruiting: New South Wales. Contact: ssi.operations@sydney.edu.au

Western Australia Retinal Disease (WARD) study - Sponsor: Lions Eye Institute, Perth WA
Disease: All inherited retinal diseases Participants: Carriers, Patients, Family
Based at the Lions Eye Institute, this study tracks people with inherited retinal diseases (IRDs) through 6-monthly eye assessments. It also collects blood and skin samples to support disease modelling and the development of personalised treatments.
Recruiting: Western Australia. Contact: fcreceptionist@lei.org.au

SUBSCRIBE TO RETINA AUSTRALIAÕS NEWSLETTERS at retinaaustralia.com.au/subscribe


We hope you have enjoyed this edition of Retina Reporter. Please feel free to contact the Retina Australia team at info@retinaaustralia.com.au if you have any questions about the contents of this newsletter.