Quality of Life: A history of funding from SRUK

Our mission is to improve the lives of everyone affected by scleroderma and Raynaud's and the research we fund is key to helping us achieve our goal.

Meeting the needs of our community is at the core of the charity's activities and the research we fund has been central to our work in developing SRUK's research strategy.

We have defined 4 key themes to help inform our decisions when funding research: earlier diagnosis, causes, precision medicine and quality of life.

Examples of such SRUK-funded research includes work done to identify major biomarkers to accelerate early diagnosis, the introduction of management tools that provide information on how rapidly the disease is progressing, and investigations into the efficacy of treatments.

The community research panel thought it was really important to consider a person's quality of life, taking into accounting their physical and mental health, relationships, goals and achievements and that SRUK should continue to invest in research into improving quality of life.

Here, we highlight some examples of research projects that have been funded by SRUK in the past which focus on improvement of quality of life.

Assessing lung involvement in systemic sclerosis to enable effective treatment

The implementation of a new technique successfully developed by Dame Carol Black, Professor Athol Wells and Professor Chris Denton has enabled clinicians to diagnose lung fibrosis, reducing the need for experts and thus allowing for a more rapid diagnosis. This is now the international standard for assessment and helps maintain quality of life by ensuring that some patients get the treatment they need whilst protecting others from severe side-effects caused by medication that will not help in their case.

Lung fibrosis is found in over 50% of patients with scleroderma and is the leading cause of SSc-related mortality. Due to the pace at which it can progress, those with advanced lung fibrosis must be treated aggressively by dampening the immune response, however as there can be severe side-effects to this, it is critical that only those who really need it are administered with this medication.

The previous assessment method was not precise enough, and so this team developed a technique that relies on cross-sectional x-rays of the body and reconstructs an internal view of the lungs, alongside lung function tests to display how well the lungs are performing.

Better and more effective treatments

The availability of treatment and its suitability play a critical role in someone's quality of life, either in terms of controlling or halting the progression of long-term conditions such as scleroderma and Raynaud's. Scleroderma is a very complex condition, and this is further exaggerated by the fact that many questions surrounding the condition remain unanswered.

Well-known treatments such as iloprost and other vasodilators were first investigated by the Raynaud's and Scleroderma Association and Scleroderma Society funded researchers. Leading from this, effective non-invasive procedures such as laser and intense light pulsed treatments are now being assessed for their efficiency. These methods may aid with spider veins that are sometimes visible on the face, hands and forearms. The implementation of treatments such as these can have a profound impact on quality of life, chiefly by limiting and reducing the symptoms associated with Raynaud's and scleroderma, and by targeting the physical manifestations of the conditions that may affect a person's self-confidence.

Improving gastrointestinal management

Loss of bowel control is an especially unpleasant symptom triggered by scleroderma and is one which is poorly understood. Health issues caused by the gut are among the most common manifestations, with approximately 8 in 10 people with scleroderma finding that the immune system is attacking their digestive system. A research team at University College London Hospital established a new, painless method of enabling patients to regain some bowel control, and thus improve their confidence in going about their day-to-day lives. The results of the team's research suggested that faulty nerves could be the cause of SSc-associated bowel control loss, as a 12-week course of stimulating certain nerves in the leg with electric pulses helped to reduce the number of bowel control incidents reported by patients. This is now being considered by the NHS as a possible standard treatment.

At SRUK, we are continuing to build on this history of funding key research that will accelerate benefits to people living with scleroderma and Raynaud's.

We recently announced a joint funding call for research projects focused on developing effective outcomes measures in patients with scleroderma and Raynaud's. More effective ways to measure the outcome of treatments means that we can then have more effective treatments with fewer toxic side effects.

We are pleased to be partnering with the World Scleroderma Foundation in running this grant call. We will be assessing applications throughout the winter of 2019, and will be announcing the successful applicants in March 2020 at the World Scleroderma Congress.

We can only carry out activity like this with your amazing support. We are incredibly thankful to our SRUK community for their kind and generous donations. It's only through working together that we can create a world where no one has to suffer from scleroderma or Raynaud's.

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.