Scleroderma and Raynaud's UK, and our predecessor organisations before us, have long recognised that detecting the conditions earlier is key to ensuring that people live longer and better lives. A significant portion of funding over the last 30 years has gone to those studies which have improved our understanding of the early warning signs of the conditions.
Improving imaging techniques for nailfold capillaroscopy
Over the years SRUK, and its predecessors, have funded studies conducted over time around a single focus area that has the potential to truly accelerate progress. One example of this is the support that the organisations have given researcher clinicians such as Professor Ariane Herrick at the University of Manchester in developing nailbed micro capillaroscopy. The smallest blood vessels we have in our bodies are called capillaries. In normal Raynaud's these capilaries are unaffected, but if the disease is progressing into scleroderma, it leaves its first marks on the tiny capillaries, scarring and distorting them. Spotting this damage gives doctors the best chance to get on top of the disease, minimizing the window where lasting systemic damage can occur.
Unfortunately, spotting this capillary damage reliably is hard. All people are built slightly differently, with no typical 'sign' of scleroderma. The solution is to monitor changes to the capillaries in the hand over time, but the hundreds of meters of capillaries in just one hand makes it hard to compare the same area. This difficulty means that it can be common for doctors to miss the warning signs, and finding a way to help has represented a technical challenge.
Over the last 12 years, SRUK (and the RSA and Scleroderma Society) have supported Professor Ariane Herrick in tackling this challenge. Professor Herrick's team was able to develop computer software that can weave individual images of capillaries into a detailed and highly reproduceable image. At a glance physicians are now able to visualise the entire nailbed, and compare it with the entire nailbed from a previous date to look for the signs of the disease. This means that the early indicators of scleroderma can now be monitored and therefore identified fairly early into the development of the condition.
Developing new ways to monitor heart involvement
Systemic sclerosis can represent a severe prognosis for many people, with as many as 1 in 3 people developing heart problems. Identifying the people at the most risk has been a challenge, as heart involvement needs to be detected fairly early. As part of the commitment to early detection research, SRUK funded a study led by Professor Maya Buch in the University of Leeds to track people who are at risk of developing heart involvement.
Professor Buch used a technique that can provide detailed insight into the heart based on this variation. This relies on a technique called CMRI that uses magnets that are so powerful they make water molecules vibrate. Different tissues in the body have different amounts of water within them and so vibrate differently. By measuring this, CMRI can build a highly detailed image of the heart, one that can show the earliest signs of damage. This technique was tested on 20 people living with systemic sclerosis who showed no outward symptoms of heart involvement.
In testament to the power of this technique, a quarter of this test group were found to have the early signs of heart scarring. In order to understand more about the earliest symptoms, study members also had a monitoring device implanted in the upper chest, to monitor the heart for the earliest signs of any heart related issues. Through a combination of scanning and the implant, the results of this study have significant implications for identifying potentially life-threatening complications at the earliest stage.
Utilising AI and other cutting edge technologies to make better use of data
As SRUK moves into the next stage of its work in accelerating research, we are committed to identifying future potential technologies that can really ensure that patients feel the benefits of research sooner rather than later. Artificial Intelligence (AI) is a technology that has become hugely sophisticated, and effective, over the last five years and could prove to be invaluable in healthcare improvements in the future. AI can be used to analyse incredibly huge datasets and identify patterns of activity that could have implications for our understanding of the early symptoms of scleroderma.
As part of our commitment to furthering research into early detection, SRUK has already invested in a research study that will track people with secondary Raynaud's over a period of time to determine what the earliest indicators of scleroderma are. We have also partnered with a technology company so that more information can be collected from the people taking part in the study. This partnership allows us to collect data such as lifestyle data, biometric data (e.g. heart and pulse rate) and how often someone will report a Raynaud's attack. This means that we can then take all of this data and use AI technologies to understand what the specific circumstances are that lead to someone developing the condition and crucially, what the key early warning signs are.
We can only continue ground breaking work such as this with your support. SRUK relies on the support of its community, including friends and families of people living with the conditions. Together, we can bring about a world where people living with scleroderma and Raynaud's live better and longer lives.
If you are interested in helping SRUK to fund work like this, then please make a donation today. We rely on the generosity of our community to continue to support groundbreaking research in both scleroderma and Raynaud's.
We recently spoke with our community about Why Early Detection Matters to them, as well as our fundraisers who are Shining a Spotlight on the Importance of Early Detection.