February is Age-related Macular Degeneration awareness month and over the past few weeks organisations around the world have been talking about a disease that affects 1 in 10 people over the age of 65 rising to 1 in 4 people over the age of 75 in the developed world (1).
But what is AMD? AMD causes progressive loss of central vision as part of the back of the eye, the macula, becomes damaged. This loss of central vision impairs your ability to see detail, you lose the ability to read, to drive and even recognise faces. Over time this can become so severe as to lead to clinical blindness. AMD can be split into two forms, known as ‘wet’ and ‘dry’. Current treatments are only available for the ‘wet’ form of AMD and are both expensive and invasive. However, 90% of AMD patients have the ‘dry’ form of the disease, for which there is no cure or treatment.
AMD is not a rare disease, and is responsible for 50% of blindness and severe sight loss in the UK (2).
Detection of early-stage AMD is difficult – with no noticeable effect on vision until it has progressed to the later stages of the disease, picking up the signs of early AMD is incredibly hard.
Without early detection, early intervention is impossible.
By 2040 it is predicted that over 288 million people will be suffering from AMD – If these people were a country, it would be the 4th most populated – only behind China, India and the USA (3). As people lose their vision, they require more help and support and their ability to lead their lives independently is lost. In our ageing societies, AMD is an ever-increasing global problem that will likely impact most people eventually, whether that’s through a friend, family member, or even yourself. This in turn is going to lead to increasing demand on support services that are already under pressure.
The prognosis if you are diagnosed with late-stage AMD is currently not bright.
Action Against AMD (AAAMD) wants to change this. The gap that exists between current research and a treatment in the clinic for both dry and early AMD is vast but bridgeable and AAAMD is beginning to lay out the first foundation stones before starting on the bridge as well.
To understand the early stages of AMD, researchers need to look at lots of eye data across the health spectrum, so we are looking to make this data available
Bringing together the public and researchers is essential to safely share eye data and promote scientific discovery, so we are working with data hubs and frontline service charities
Driving drug repurposing (that is: finding drugs designed for other diseases that might also work for AMD) could provide a swift route from the laboratory to the clinic, so we are facilitating this kind of projects.
AAAMD is tackling the problem of this devastating disease from critically underused angles to push towards our end goal of ending sight loss from AMD. Coordination is key to unlocking the unknowns of AMD without leading to duplication of work and wasted resources and AAAMD is in a position to avoid this by helping build, nurture and drive collaborations in key areas of research.
For researchers to understand the underlying causes of AMD they need access to eye scans showing everything from healthy eyes through to late-stage disease. Only then can changes related to progressive disease be identified. However, it is vitally important that use of data from the public is subject to careful oversight to build trust. AAAMD are working in the UK with the Open Data Institute (ODI), and Health Data Research UK in INSIGHT: an NHS-led partnership established to improve healthcare by encouraging research using routinely collected eye data. Hand in hand with the use of existing eye data is the use of existing medications for new purposes. The repositioning of medicines is a well-trod path that allows medicines with already established safety data to be used in other conditions without having to re-establish safety. This not only saves money but massively speeds up the transition from idea to clinical treatment. However, repositioning requires solid understanding of the underlying biology from which to identify the right medicines that might be of use.
Encouraging research into the causes of AMD and collecting data from patients at various stages of disease helps researchers to identify the biological underpinnings of AMD. This allows the identification of medicines that are already known to influence those systems and for us to push for their testing as treatments in AMD.
Over the past year we have seen phenomenal progress made in tackling the COVID-19 pandemic but the astonishing speed of response was built on the back of open sharing of data and the repositioning of existing medicines - both approaches that AAAMD advocates strongly for and is using to tackle the problems surrounding AMD. The past year has shown that by working together we can find existing treatments for new diseases such as dexamethasone as validated by the RECOVERY trial (4). A future using the same collaborative methods is very promising indeed.
Moving forward we intend to partner with initiatives looking more broadly at early-stage disease detection, allowing the sharing of resources and expertise to push towards faster progress. This will include gathering information from community-based sources, such as opticians and optometrists, to fill in the gaps on early-stage disease that are so crucially missing. Giving researchers access to such a diverse range of data unlocks opportunities that were critically missing before and opens the way for progress to be made.
Action Against AMD
One Vision. Every Effort.
References:
1 Risk factors for age-related macular degeneration: Pooled findings from three continents. Smith W, Assink J, Klein R, Mitchell P, Klaver CC, Klein BE, Hofman A, Jensen S, Wang JJ, de Jong PT Ophthalmology. 2001 Apr; 108(4):697-704.
2 Quartilho A, Simkiss P, Zekite A, Xing W, Wormald R, Bunce C. Leading causes of certifiable visual loss in England and Wales during the year ending 31 March 2013. Eye (Lond). 2016;30(4):602-607. doi:10.1038/eye.2015.288
4 https://www.recoverytrial.net/
Originally published on LinkedIn.