Thursday 14th November 2024
Be Part Of The Answer
SRUK launches first of its kind Raynaud's Citizen Science campaign - calling for 10,000 people to Be Part of The Answer to unlocking progress on Auto-immune conditions affecting millions
SRUK have made a significant contribution in providing funding for this two-year pilot study, which is well underway. Initial results are promising, and the success of the study means that the implantable loop recorder can then be examined through a wider clinical study.
Every person with systemic scleroderma will experience their condition differently. This means that while some people may experience skin involvement, others may experience heart and lung involvement, which can be difficult to detect and treat.
Heart involvement is tricky to detect when it initially develops, however by the time it is evident it can be quite far in progression – leading to a poor prognosis. It presents in a variety of ways including arrhythmia, poor heart function and sometimes sudden death. We know that between 15-35% of people with systemic scleroderma will have heart involvement, but we still don't understand when and how this occurs.
Detecting heart involvement earlier is key to ensuring better survival. This is because earlier treatment and intervention can be given to people who are presenting with heart complications, thus saving lives.
Current methods of detecting heart involvement, like echocardiograms and electrocardiograms, only monitor the heart during discrete periods of time. The lack of continuous monitoring means that early symptoms, which may not be obvious, will be missed. Professor Maya Buch at the University of Leeds is carrying out a long-term study to see whether an implantable cardiac monitor can detect early heart problems in people with systemic scleroderma.
According to Professor Buch, the study “aims to examine for the presence of cardiac abnormalities in patients with systemic sclerosis, and their relationship to disease type, time course and severity." The data recorded by the monitor will be used to correlate against fibrosis patterns in the heart, particularly examining whether the poor blood flow leads to scarring in the heart.
Any evidence of the scarring process, blood vessel injury and poor heart function shown through the study can then be used to help individuals with systemic scleroderma who may not have shown signs of heart involvement yet, as they can be monitored to determine whether they present with any early signs.
SRUK have made a significant contribution in providing funding for this two-year pilot study, which is well underway. Initial results are promising, and the success of the study means that the implantable loop recorder can then be examined through a wider clinical study.
This study has wide ranging ramifications for the scleroderma community and has a huge potential to save lives.
While we support some amazing research projects, we at SRUK are unable to fund all the applications we receive. If you would like SRUK to continue to support more research projects like this, then please consider making a donation. This will mean we can invest in more projects and get all the more closer to finding a cure.
Thursday 14th November 2024
SRUK launches first of its kind Raynaud's Citizen Science campaign - calling for 10,000 people to Be Part of The Answer to unlocking progress on Auto-immune conditions affecting millions
Wednesday 16th October 2024
Together, Heat Holders and SRUK can combine their expertise, passion, and resources to make a meaningful difference, offering practical solutions to those who are most affected by the cold.
Tuesday 23rd April 2024
Have your say on the way your services are working for your Rare Autoimmune Rheumatic Disease (RAIRD)