Australia (Commonwealth Union) – Inherited retinal diseases (IRD) is a set of diseases that can lead to severe visual impairments or even blindness. Many Australians with IRDs have a keen desire to undergo gene therapy to block and treat blindness, however education programmes are the need of the hour to assist in informed decisions in regards to future treatments, according to a new study.
The research, led by the Centre for Eye Research Australia, together with the University of Melbourne, indicated the findings of the 1st national survey inquiring from Australians living with IRD and their care providers in regards to their knowledge and opinions on gene therapy. The study, led by Associate Professors Heather Mack and Lauren Ayton, delivers new details into patients’ information of emerging gene therapies, techniques applied, their keenness to use future treatments and their opinions on possible costs and logistics.
Associate Professor Ayton stated that until recently, persons with an IRD would be made aware that the condition was incurable and instructed to get ready for progressive and irreversible vision loss. “But rapid advances in gene therapy are for the first time offering the potential of treatments that will stall, or even reverse vision loss. There is now an approved gene therapy for a rare form of retinitis pigmentosa and there are multiple clinical trials of gene therapies for other genetic eye conditions underway around the world,” she noted, adding that it was important for patients have the information required to make future informed choices.
Approximately 5% of Australians with IRD, almost 700 people, were surveyed and 92% of them expressed interest in undergoing gene therapy if it was an option for their condition in the future. Under 28% stated having a good understanding of gene therapies. Over 49% obtained more details about gene therapy from the Internet than their ophthalmologist which was 37.9 per cent.
