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Science and Research
VENTURE Study
Our objective is to understand the natural progression of inherited retinal diseases and identify people who may be eligible for upcoming clinical trials.
Overview
New treatments are currently being developed for inherited retinal diseases (IRDs). This means researchers require a good understanding of the natural progression of these diseases to measure their success, as well as a database of people who may be suitable for upcoming clinical trials.
The Victorian evolution of inherited retinal diseases natural history registry (VENTURE study) is a collaboration between the Centre for Eye Research Australia and the University of Melbourne, and collects retrospective and prospective data from people with inherited retinal diseases to drive research forward.
Why this research is important
Inherited Retinal Diseases (IRD) are the most common cause of blindness among working-age Australians.
Less than a decade ago IRDs were considered to be untreatable.
However, in recent years, advances in genomic research have enabled more people to find out what is causing their vision loss. And rapid advances in gene therapy research and other innovative therapies are providing hope that new treatments will become available to stall vision loss and restore sight.
Understanding how these diseases progress will help identify people who might be suitable for new, emerging treatments, and measure the success of future clinical trials.
Key research questions
- Can we track the progression of people with an inherited retinal disease and identify biomarkers to be used in future clinical trials?
- Can we recruit for investigator-initiated research studies, including longitudinal
natural history studies and genotype/phenotype studies? - Can we identify people who may be eligible for upcoming industry-sponsored clinical trials?
VENTURE team
- Dr Ceecee Britten-Jones – Postdoctoral Fellow
- Janise Hermawan – Clinical Research Orthoptist
- Bhaj Grewal – Clinical Trial Coordinator
- Elise Cichello – Clinical Trial Coordinator
- Nikita Thomas – Clinical Research Coordinator
- Angelina Atanassova – Research Administration Assistant
- Sena Gocuk – Clinical Trials Coordinator
- Maria Kolic – Clinical Operations Manager
- Associate Professor Heather Mack – Associate Researcher
- Parker Truong – Data Coordinator
- Rachele Stin – Research Orthoptist
- Sujani Thrimawithana – Clinical Research Coordinator
Contact
For more information and to get in contact with the VENTURE team about the registry, please email IRD@groups.unimelb.edu.au