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Vision Expo 2023 – Stand 10

VENTURE study – inherited retinal disease

About our research

Our objective is to understand the natural progression of inherited retinal diseases (IRDs) over time. This helps to identify people who may be eligible for upcoming clinical trials and other research opportunities.

What you’ll see

Samples of genetic kits that are used to identify genes involved in IRDs.

Talk to us about

  • How do we identify people who might be suitable for upcoming IRD clinical trials?
  • What is the natural history of IRDs?
  • How genetic testing works.

Who you’ll meet

Parker Truong

Parker Truong is the VENTURE Study Data Manager and a final year Master of Genetic Counselling student. Parker plays a key role in linking participants with genetic counsellors once their genetic test results are returned, allowing participants to have a better understanding of their inherited retinal condition.

Dr Ceecee Britten-Jones

Dr Alexis Ceecee Britten-Jones (also known as Ceecee) is a Research Fellow at CERA. Her current research foci are investigating the genetic and phenotypic characteristics of inherited retinal diseases (IRDs) and developing outcome measures for gene therapy clinical trials.

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Sena Gocuk

Sena Gocuk is an optometrist and PhD candidate investigating structural and functional characteristics in female carriers of x-linked inherited retinal diseases (IRDs).

Some stories about our work

Research

Patients need education on future gene therapies

Australians with inherited retinal diseases (IRDs) have a strong interest in undergoing gene therapy to prevent and treat blindness – but there’s a critical need for education programs to help them make informed choices about future treatments.

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Research

Venturing forward

A registry gathering vital information on people with inherited retinal diseases will help drive research into the most common cause of legal blindness in working-age Australians.

Read More