The Save Sight Registries (SSR) will begin tracking key outcomes for a sight-threatening condition called atrophic macular degeneration (advanced ‘dry’ age-related macular degeneration) as treatments start to become available.
The Registries will upgrade its existing macular degeneration audit within the Fight Retinal Blindness! (FRB!) Project to track real-world visual outcomes for both atrophic macular degeneration and ‘wet’ age-macular degeneration.
“Over the past decade, the Fight Retinal Blindness! Project has shown the value that real-world evidence presents to patients, doctors, and industry,” said Chief Investigator, Professor Mark Gillies.
“Drugs that can slow the progression of macular atrophy are new to the market. While we know they are effective in clinical trials, we don’t know how these medications will work in millions of people affected by macular atrophy. As the drugs make their way to clinics it’s vital that we understand how they work in the general population.”
Macular atrophy is a form of advanced age-related macular degeneration. It occurs when the ‘photoreceptors’ (the cells that pick up light in the macular) degenerate or ‘atrophy’. This can affect the central vision, impacting one’s ability to perform everyday tasks like reading, writing, driving and recognising faces.
Until 2023, there were no approved treatments for atrophic macular degeneration. The condition can now be treated with injections that aim to slow the progressive loss of vision that it causes.
The FRB! Project will include new fields that track the area of atrophy and distance of atrophy from the centre of the macula to see if these injections are helping patients.
“With our experience in the field, FRB! is in a key position to track outcomes for atrophy for the newly available drugs, as well as those yet to be approved,” Professor Gillies said.
“Treatments for atrophy have been years in the making, so it’s important that we can understand their impact.
“Our aim is to capture high-quality, real-world data, that is, what happens to patients when they see the doctor, to not only understand how these treatments work, but to make recommendations for treatment regimens to get the best possible outcomes for patients worldwide.”
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The details of the expanded module will be presented to users at an upcoming webinar on Wednesday 29 November. If you are an existing or prospective FRB! User and would like to attend the webinar, please email ssi.ssr@sydney.edu.au