News article - EULAR publish new recommendations for non-pharmacological management in Systemic Sclerosis

EULAR have recently developed new recommendations regarding non-pharmacological management of Systemic Sclerosis. Non-pharmacological management approaches aim to ease disease symptoms and improve quality of life, or help to prevent a patient’s condition from worsening. By working with healthcare professionals and patients, EULAR have published a new set of recommendations, which have the potential to improve the management of Scleroderma and the quality of life of patients. Read on to find out more!
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News article - The Mouth in Scleroderma - Tools to Help Dentists Better Understand Your Condition

In 2021 SRUK funded a research project led by Professor Liz Walker, based at the University of Hull, entitled 'Scleroderma in the Mouth: Improving Pathways to Care'. The project focusses on improving oral and dental care in Scleroderma to help improve quality of life. The team have recently produced some useful materials to foster greater awareness of the oral manifestations of Scleroderma amongst dentists. Read on to access a video and information card which you can show to your dentist to help them learn more about your condition and how it affects your oral health.
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News article - Imperial College London's 'Science in Medicine School Teams Prize 2024' now open for entries

The Scleroderma and Raynaud’s UK sponsored 'Science in Medicine School Teams Prize 2024' contest is now open for entries. The contest aims to engage sixth form school students with science in medicine, and challenges students to prepare an ePoster with a novel vision on how to promote the health and well-being of individuals with Scleroderma and/or Raynaud’s. If you're interested in entering, or know someone in sixth form who might be, read on to find out more!
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News article - Celebrating World Clinical Trials Day!

20 May 2021 is World Clinical Trials Day to mark the anniversary of the first-ever trial that was conducted in 1747. Today, clinical trials are vital in determining the safety and efficacy of new treatments all over the world. But what happens in a clinical trial, and could you take part?
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News article - Your Raynaud’s and You – Insights from SRUK’s work on the Raynaud’s App

Can you imagine a world where we could have a greater understanding of Raynaud’s? Have more information on what triggers an attack? Understand how in some cases Raynaud’s combined with other symptoms may be an early predictor of scleroderma? The Raynaud’s ResearchApp, an SRUK-led partnership with app development company Healthbit and data company D4T4, intends to do just this!
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News article - The Raynaud’s App: the story so far

SRUK is pioneering ‘The Raynaud’s ResearchApp,’ that aims to help identify Raynaud’s patients at risk of developing scleroderma, with a view to achieving earlier diagnosis and improved outcomes. The technology also enables users to record their experiences of Raynaud’s symptoms and learn more about potential triggers. The App has recently been piloted in a clinical trial.
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News article - A Design for Life: is scleroderma in the genes?

What is the link between our genetic code and developing scleroderma? Researchers from Spain have recently studied genetic alterations and established a connection with the pathways that dictate the clinical features of scleroderma. The study is significant because increasing our understanding of the genetic pathway could be a faster route towards identifying effective new therapies for this complex condition.
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News article - Open Research - revolutionising the publishing process for SRUK research

SRUK is working with our partners at the Association of Medical Research Charities via their new Open Research Platform, to revolutionise the publishing process for our researchers. This will enable SRUK-funded research groups to publish their work in a streamlined and cost-effective way, with the ultimate goal of translating new knowledge into effective treatments for people living with scleroderma.
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News article - What's the outcome? Measuring the effectiveness of new treatments in clinical trials

Clinical trials are the only way to ensure that new treatments are effective. But how exactly does the process work? FInd out why 'outcome measures’ and ‘endpoints’ are crucial, and how SRUK funding is playing a key role in improving the measures used in treatments for scleroderma.
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News article - The Link Between Metabolism and Fibrosis in People With Scleroderma

A new study from the UK has identified a possible connection between metabolism and fibrosis in people with scleroderma, with the potential to open up new treatment avenues in the future.
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News article - SRUK’s co-funded project with World Scleroderma Foundation seeking to improve the Combined Response Index in SSc Score.

An important part of participating in a project such as this is ensuring that you understand how the collected data will be used and why community input is so valuable and fundamentally vital.
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News article - Findings of nintedanib's safety and tolerability published

A team of researchers based in the USA, UK, Germany, Switzerland and Japan sought to examine the results of the SENSCIS trial to assess the safety and tolerability of nintedanib in people with SSc-ILD.
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News article - The CRISTAL Index

SRUK funding is playing a key role in improving how we determine the success of new treatments in clinical trials. These projects aim to better inform researchers of the impact of potential therapies, ultimately improving wellbeing and quality of life for people living with scleroderma.
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News article - Collaboration is Key: Developing a New Diagnostic Tool for Scleroderma

“We are limited by current assessment tools such as the skin score, which is limited by subjectivity, as well as the time needed for training and standardisation. We need to make sure that new treatments are evaluated in the best and most robust way so that we can make more progress and discontinue approaches that do not work.” Prof. Chris Denton
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News article - Touching on Touchscreens - Making Technology More Accessible for People With Scleroderma

Are you reading this from a touchscreen device? Using touchscreen technology is something many of us do every day, without even thinking about it. But what happens to the people who have conditions that make touchscreens tough?
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News article - Could I be at risk? What we know so far about immune responses to the COVID-19 vaccination in those with weakened immune systems

As the UK strives to give every adult their COVID-19 vaccinations, what do we know about their effectiveness in protecting those with weakened immune systems such as some individuals with scleroderma?
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News article - Utilizing Ultrasound

Dr Victoria Flower was awarded funding by SRUK to research non-invasive methods of skin assessment in scleroderma. Last month, her work was published in The Journal of Rheumatology, discussing the potential use of High Frequency Ultrasound as a more objective and detailed measure of skin involvement in scleroderma.
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News article - Just in time! UK approves new COVID-19 treatment for immunocompromised individuals

As OCTAVE study sheds light on the reduced immune response in those with chronic illness, the new antibody treatment from Regeneron and Roche could be of great benefit for those who are immunosuppressed or immunocompromised.
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News article - The OCTAVE Study: Scaling up our understanding of vaccine effectiveness in people living with autoimmune conditions

OCTAVE study reveals how effective COVID-19 vaccinations are in immunocompromised participants
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News article - 2021 Virtual Conference Round-Up

A series of talks took place throughout the day, covering areas of research funded by SRUK, advice on symptom management, and discussions about the future. This article offers a brief overview of each talk as a taster, and in the coming months they will be made available online.
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News article - Creating Clinical Trials for Children

: Affecting around 200 children in the UK, Juvenile Localised Scleroderma is an incredibly rare condition. Developing new treatments is challenging due to small numbers of patients. Find out how SRUK and Alder Hey are tackling this!
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News article - Stratified Medicine - The Latest SRUK Grant Call

What is stratified medicine? Stratified medicine is also known as personalised medicine and works by dividing patients within the larger group into subgroups by factors that make their condition different.
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News article - UPDATED: Breaking News - NICE approve Nintedanib for use in PF-ILD, which includes SSc Interstitial Lung Disease

SRUK are pleased to announce that NICE have approved the use of Nintedanib in treating progressive fibrosing interstitial lung disease (PF-ILD)!
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News article - 2021 Flu Season - Are you at risk? Are you eligible for the vaccine?

With autumn now firmly upon us, we are facing the onset of the winter flu season. If you have systemic sclerosis you may be at a higher risk if you catch the flu. What can you do to protect yourself?
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News article - First take at home COVID-19 antiviral treatments approved for vulnerable adults

Yesterday, the UK’s Medicine and Health products Regulation Agency approved the world’s first ‘take at home’ COVID-19 treatment, Lagevrio – one of two antiviral treatments secured by the UK Government in October.
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News article - Omicron - The Latest COVID-19 Variant: Should I be Worried?

A new COVID-19 variant originating from South Africa is making headlines due to its large number of mutations and the risk they pose. Designated as a ‘variant of concern’ by WHO, how worried do we need to be about the Omicron variant, and what do you need to be aware of?
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News article - Increasing access to COVID-19 treatment for those most vulnerable

On the 8th December the UK government announced several measures to ensure those who are most at risk from COVID-19 are given access to new treatments within their community, and where possible, within their own home.
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News article - A Gut Feeling: The Microbiome and Scleroderma

At the 2021 SRUK Virtual Conference Dr Elizabeth Volkmann presented a very popular session on Understanding Gastrointestinal Involvement in Scleroderma – where she introduced the concept of how a person’s microbiome might influence their condition. This article takes a deeper dive into the world of the microbiome.
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News article - Fast-forward to 2040: What does the future hold for Scleroderma?

As we come to the end of 2021, SRUK have been thinking about the new year, and the one after that… and the one after that. In just 12 months, we have seen huge change across the world, which got us thinking, what could things look like in 20 years?
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News article - What's New? Upcoming Research on Fibrosis

Welcome to 2022! The new year is a perfect opportunity to look forward and see what upcoming research is on the horizon.
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News article - Introducing STAR!

STAR is the newly upgraded app for tracking your Raynaud’ symptoms. The App was created to help you manage and record your attacks, all whilst contributing to valuable scientific research in just a few simple clicks.
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News article - What's New? Upcoming Research on Raynaud's

Happy Raynaud's Awareness Month! In this week's article we take a closer look at some of the upcoming research focused on Raynaud's!
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News article - New Research Project Funded: Stratified Medicines of the Future

Can you imagine a future where we will be able to eliminate trial and error in prescribing medications by predicting the best treatment for a person’s scleroderma before they even receive it! The winning proposal of the SRUK/ WSF Stratified Medicine of the Future Award aspires to make this a reality.
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News article - MELODY - Vaccine Efficacy in Immunocompromised People

A national trial is recruiting people with scleroderma to see how they have responded to their COVID-19 vaccinations. Have they produced antibodies?
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News article - The VEDOSS Project – Predicting the Progression of Raynaud’s to Systemic Sclerosis

New research suggests the ‘VEDOSS’ Criteria could be used to accurately predict which individuals living with Raynaud's are likely to progress to Systemic Sclerosis, prompting further hope regarding the early detection and treatment of the condition.
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News article - Innovative Medicines Fund: Accelerating treatments to the rare disease community

Yesterday saw the launch of the Innovative Medicines Fund (IMF) - a scheme which will give NHS patients living in England, including those with rare diseases like Scleroderma, the chance to have ‘early’ access to cutting-edge treatments offering them the best chances of a longer and healthier life.
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News article - Identifying Scleroderma Patients at Risk of Pulmonary Hypertension - US Study Provides Potential Biomarker for the Condition

A new US study has found that scleroderma patients who test positive for ‘anti-Th/To antibodies’ are at higher risk of developing pulmonary hypertension (PH) in comparison to other patients.
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News article - Getting a Grip on Scleroderma: Double Hand Transplant for Scleroderma Patient

A British man has become the first Scleroderma patient to receive a double hand transplant for the condition, giving him a new lease of life and prompting hope for many of those most severely affected by the condition.
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News article - ‘Olive Ayoub Intermediate to Late-Stage Post-Doctoral Research Fellowship’ Opens for Applications on 29th June

On 29th June, Scleroderma & Raynaud’s UK will open applications for the Olive Ayoub Intermediate to Late-Stage Post-doctoral Research Fellowship, which will enable one exceptional, non-tenured post-doctoral researcher to transition from postdoc to research leader in the field of scleroderma.
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News article - Six Months of STAR – the Symptom Tracking App for Raynaud’s

July marks six months since SRUK launched STAR, the Symptom Tracking App for Raynaud’s, which enables members of the SRUK community to track their Raynaud's attacks and contribute to essential scientific research into the condition.
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News article - SRUK supports the call on the UK Government to provide Evusheld - a preventative antibody treatment for COVID-19

SRUK is supporting the call for the UK Government to procure and provide Evusheld to patients in the UK. Find out about how you can help on this page.
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News article - Helping demystify multi-organ fibrosis: The DEMISTIFI study

Would you like to find out more about a new study that aims to improve how we understand and treat fibrosis?
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News article - Evusheld Survey: New treatment to prevent COVID-19 infection in people with poor immune systems

Do you have scleroderma, and a weakened immune system? Help decide whether @NICE make a new preventative treatment available, which protects against COVID-19 infection, by completing our survey.
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News article - Oral and Dental Problems in Scleroderma: New SRUK-Funded Research Aims to Improve Pathways to Oral Care

Exciting new research being run by Professor Liz Walker at the University of Hull and the University of Leeds is aiming to improve oral and dental outcomes for people living with scleroderma, by improving pathways to oral care. Find out how you can help!
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News article - From cancer to autoimmunity: Could CAR T cell therapy cure scleroderma?

CAR T cells are an exciting and emerging therapy which have been used to treat certain cancers, giving hope to those for whom no other treatments have worked. A recent study carried out in Germany which studied patients with lupus suggests that this therapy could be of use in treating a host of autoimmune conditions including scleroderma.
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News article - Reducing Uncertainty in the Progression of Lung Fibrosis in Scleroderma Patients

Having scleroderma often means living with uncertainty around how the disease will progress over time, and the effect that this could have on future quality of life. New research funded by SRUK aims to help address the impact of this ‘prognostic uncertainty’, by using indicators that will predict disease progression and ultimately improve treatment options.
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News article - Winter Vaccinations: Get Your COVID-19 Boosters & Flu Vaccines Now!

To help protect those at risk from COVID-19 & flu, the NHS is currently offering flu vaccines and an autumn COVID booster to those with weakened immune systems, the over 50s, and household members of those who are deemed clinically vulnerable. These vaccines can reduce your chances of catching the viruses and getting seriously ill as a result of them. It's as important as ever to make sure that you, and those in close contact to you, are protected from infection before winter rolls around, so read more about how to get both vaccines here!
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News article - Treating Fibrosis in Scleroderma: SRUK-funded study lays groundwork for potential new treatment for scleroderma-related skin fibrosis

A recently completed study funded by SRUK in 2018, led by Professor Richard Stratton at the Royal Free Hospital, has laid the groundwork for a potential new treatment for scleroderma-related skin fibrosis, which could enable effective and painless treatment of fibrosis in people living with scleroderma.
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News article - New study could help find a treatment for scleroderma-related fibrosis

Do you have diffuse systemic sclerosis and live in the UK? Read on to find out how you could take part in a new study which could inform a clinical trial of a new treatment!
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News article - The MINIMISE-Pilot study: seeking to minimise disease progression in limited scleroderma

Do you have limited systemic sclerosis and live in the UK? Read on to find out how you could take part in a clinical trial of a treatment for the condition.
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News article - STAR turns 1! Here’s what we learned from the Symptom Tracking App for Raynaud’s in 2022

January 2023 marked the 1st Anniversary of the SRUK STAR App. The data contained within the app helps facilitate research into Raynaud’s, allowing us to learn more about the condition and how it affects our community. Read on to find out more about the STAR App and what your data has shown us so far!
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News article - SRUK Research Sheds Light on the Effect of Calcinosis on Patients

Calcinosis is often a debilitating and painful symptom of systemic sclerosis. Last winter, SRUK led a piece of research in partnership with Professor Ariane Herrick, which aimed to build our understanding of the effect of calcinosis on people with scleroderma. We are thrilled to announce that the findings, which our community contributed to, have been published in the journal ‘Rheumatology.’ Read on to find out more about what we learned!
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News article - British Society of Rheumatology announce plans for new revision of Systemic Sclerosis Guideline

Last week, the scope for a new revision of the British Society for Rheumatology’s systemic sclerosis (SSc) guideline was published in the ‘Rheumatology: Advances in Practice’ journal. SRUK are excited to be playing a role in this timely and relevant project. Read on to find out more about the BSR guideline and how it’s revision could benefit you!
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News article - Imperial College London's 'Science in Medicine School Teams Prize 2023' now open for entries!

The Scleroderma and Raynaud’s UK sponsored 'Science in Medicine School Teams Prize 2023' contest is now open for entries. The contest aims to engage sixth form school students with science in medicine, and challenges students to prepare an ePoster with a novel vision on how to promote the health and well-being of individuals with Scleroderma and/or Raynaud’s. If you're interested in entering, or know someone in sixth form who might be, read on to find out more!
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News article - The CRISTAL Index: Improving the assessment of new scleroderma treatments in clinical trials

One of SRUK’s central objectives is to advance research that will lead to the development of new and effective treatments. But how do we make sure that new therapies will be effective? Recently, SRUK has funded a US-based research project that will help to ensure that potential treatments are effective in ways that are relevant to both patients and clinicians. This could be vital in giving people living with the condition access to treatments that work for them.
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News article - The OASIS project: SRUK-funded research builds evidence for new methods of skin assessment in Scleroderma

A recently completed SRUK-funded research project, led by Dr Peter Worsley at the University of Southampton, has built evidence for the use of non-invasive tools which can accurately measure the health of the skin in Scleroderma. The findings of the project have the potential to drive forward the use of new, non-invasive skin assessment methods, using tools employed in the assessment of other conditions that affect the skin, which could be an important step towards improving the diagnosis and monitoring of the condition.
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News article - MELODY: Study finds immunosuppressed people make antibodies after COVID-19 vaccination

People with weakened immune systems, including those with Scleroderma, are at increased risk of developing a severe infection after being exposed to Covid-19. Vaccinations and booster doses have been offered to immunosuppressed patients since the roll-out of the NHS vaccination programme in 2020. But how well do they work in people who have weakened immune systems? Read on to hear the exciting findings from the MELODY study!
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News article - Sharing Data to Improve Lives: The SRUK Patient Registry Survey

SRUK is developing a Patient Registry, with the aim of improving outcomes for people diagnosed with Scleroderma or Raynaud's. Our Registry will be a secure, anonymous database, containing health information about people living with the conditions. It will be used to improve our understanding of Scleroderma and Raynaud's and how different people are affected over time, to help accelerate research into new and better treatments designed to improve quality of life. Read on to find out what we learned through the SRUK Patient Registry Survey, and how it will help shape our Patient Registry.
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News article - EULAR publish new recommendations for non-pharmacological management in Systemic Sclerosis

EULAR have recently developed new recommendations regarding non-pharmacological management of Systemic Sclerosis. Non-pharmacological management approaches aim to ease disease symptoms and improve quality of life, or help to prevent a patient’s condition from worsening. By working with healthcare professionals and patients, EULAR have published a new set of recommendations, which have the potential to improve the management of Scleroderma and the quality of life of patients. Read on to find out more!
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News article - Imperial College London's 'Science in Medicine School Teams Prize 2024' now open for entries

The Scleroderma and Raynaud’s UK sponsored 'Science in Medicine School Teams Prize 2024' contest is now open for entries. The contest aims to engage sixth form school students with science in medicine, and challenges students to prepare an ePoster with a novel vision on how to promote the health and well-being of individuals with Scleroderma and/or Raynaud’s. If you're interested in entering, or know someone in sixth form who might be, read on to find out more!
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