Education is vital to helping patients think about future genetic treatments for blindness

Education is vital to help patients consider future gene therapies for blindness: Australians with inherited retinal disease (IRD) have a keen interest in undergoing gene therapy to prevent and treat blindness – but educational programs are sorely needed to help them make informed choices about future treatments, new research shows.

New research reveals the results of the first national survey that asks Australians with hereditary retinopathy and their caregivers for their knowledge and opinions about gene therapy. Photo: Anna Carlyle

The study he led ophthalmic research center australia And the University of Melbourne Posted in gene therapyreveals the results of the first national survey that asks Australians living with IRD and their caregivers for their knowledge and opinions about gene therapy.

IRD is the umbrella term for a wide range of genetic eye diseases — including retinitis pigmentosa and Stargardt disease — that cause progressive vision loss and blindness. It is the most common cause of blindness in Australians of working age, affecting more than 13,000 people nationwide.

Led by Associate Professors Heather Mack and Lauren Eaton, the new study provides new insight into patients’ knowledge of emerging gene therapies, the methods used, their willingness to undergo future treatments and their views on potential costs and logistics.

Professor Eaton said: “Until recently, someone with IRD was told that their condition was incurable and advised to prepare for a life of progressive, irreversible vision loss.

But rapid advances in gene therapy are offering for the first time the potential for treatments that will stop, or even reverse, vision loss. There is now an approved gene therapy for a rare form of retinitis pigmentosa and multiple clinical trials of gene therapies for other hereditary eye diseases are underway around the world.

“It is essential that patients have the information they need to make informed choices in the future.”

An estimated five per cent of Australians with IRD, nearly 700 people, completed the survey. The main results included the following:

  • 92 percent said they would be interested in getting a gene therapy if one became available for their condition in the future
  • Less than a third (28 percent) said they had a good understanding of gene therapies
  • More people (49 percent) got their information about gene therapy from the Internet than ophthalmologists (37.9 percent)
  • 60 percent identified one or more barriers to receiving gene therapy including personal costs (30.5 percent) or fear of side effects (27 percent)
  • 79 percent said government subsidies for gene therapy are a good use of taxpayer money, but less than half think the government or private health insurance should pay for all costs.
  • More than three-quarters (77 percent) travel interstate for treatment.

Professor Mack said the findings demonstrated the need for continued targeted education about the outcomes and risks of gene therapy, and the difference between clinical research and approved treatments.

“Educating both patients and eye care professionals will be critical to bridging knowledge gaps and mistrust in understanding treatment options,” she said.

“This will require an ever-evolving education for both potential gene therapy recipients and eye care providers as new technologies and treatments are introduced.”

This research is funded by the National Health and Medical Research Council and Retina Australia. The Australian Center for Eye Research receives operational infrastructure support from the Victorian State Government.

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