by Dr Wendy Stevens (ASIG)

Australia has a strong and internationally respected scleroderma research community, and a key part of this success lies in collaboration between clinicians, researchers, people living with scleroderma, and patient organisations.

The Australian Scleroderma Interest Group (ASIG) brings together specialist clinicians and researchers from across the country who are dedicated to improving the diagnosis, understanding and treatment of scleroderma. Their work is strengthened by the ongoing support of Scleroderma Victoria and Scleroderma Australia, whose funding helps make research projects possible, contributes to specialist scleroderma nurse positions, and supports the collection of vital clinical data through the Australian Scleroderma Cohort Study (ASCS).

As well as contributing data to the Australian Scleroderma Cohort  Study (ASCS) and participating in several  international  pharmaceutical lead clinical trials of novel therapies  for Diffuse Scleroderma, Pulmonary Hypertension and interstitial lung disease St Vincents Melbourne has a  large group of  Scleroderma  researchers who all have taken specific areas of Scleroderma as their  special focus. Here are some of the projects they have been working on in the  last 12 months. 

One of the largest and most active scleroderma research hubs in Australia is based at St Vincent’s Hospital Melbourne, where a dedicated multidisciplinary team focuses on different aspects of the disease. Over the past 12 months, this team has continued to lead important research aimed at improving both outcomes and quality of life for people living with scleroderma.

Understanding Heart Health in Scleroderma – Dr Jessica Fairley

Dr Jessica Fairley is a Rheumatologist and early career researcher at The University of Melbourne/St Vincent’s Hospital Melbourne. Jess has recently completed her PhD entitled “Investigating the impact of systemic sclerosis, with a focus on cardiopulmonary disease”, which is currently under examination through the University of Melbourne. Jess’s research contribution has been recently recognised nationally by the Australian Rheumatology Association (ARA) Early Career Research Excellence Award, awarded to an early career researcher who has made an outstanding contribution to their field.

One of the major parts of her PHD was the HeartBeat Study which included both people living with scleroderma as well as a group of  volunteers without Scleroderma. The main goal of the study was to compare the  frequency of  abnormal heart rhythms,  especially things like  frequent ectopic beats to see if they were more common in  people with  Scleroderma than in people without Scleroderma. The study built on the research of Dr Laura Ross who  had previously looked at  heart muscle  fibrosis  on  cardiac MRI in a diverse group of people with Scleroderma and  found this was a very common finding  Laura also found that  that people with  Scleroderma  seemed to have a reduced exercise  capacity  compared to what we  would have expected for their age.

These research results lead to the design of Jess’ HeartBeat study which included a control group of people who were matched for age and gender to the people with Scleroderma who volunteered for the study.

Follow-up has now been completed for the HeartBeat Study. This study has provided a comprehensive assessment of heart health in Scleroderma. Jess recruited almost 70 people with and without scleroderma to take part in this study which included an MRI scan of the heart (including novel exercise MRI scans which meant that participants had to pedal on a specialised bike inside the MRI scanner!), exercise testing and heart rhythm monitoring over a 1-year follow up period. Preliminary analysis of the findings shows that people with scleroderma had a reduced exercise capacity compared to those without, with up to a 34% reduction in peak exercise capacity after adjusting for age and gender. Participants with scleroderma also had a higher blood pressure response for the same exercise load, which may relate to blood vessel stiffness which can occur in Scleroderma. Reassuringly, we’ve found no increase in risk of major heart rhythm problems. Complete analysis of these results is currently underway and we look forward to being able to share them with you in future updates.

Improving Management of Gastrointestinal Symptoms – Dr Alannah Quinlivan

Dr Alannah Quinlivan is a Rheumatologist at St Vincent’s Melbourne and PhD candidate at the University of Melbourne.  The focus of Alannah’s PhD has been gastrointestinal  features of scleroderma   such as  reflux and bowel  symptoms which are very  common in people living with Scleroderma.

One of Alannah’s projects has been to survey  a large group of people who are living with scleroderma to find out how they are  managing their reflux symptoms and what does  and does not work for them. She was particularly interested in finding out what lifestyle measures they  found helpful and which   medications were felt to be most effective.

 She surveyed nearly 300 people with scleroderma from centres around Australia.  The survey showed that the most common and effective lifestyle modifications included reducing the size of the  evening meal, waiting 3 hours between dinner and going to bed, avoiding certain foods and sleeping with the head of the bed raised. Overall, these measures were rated as moderately effective at managing reflux symptoms with an average score of 7/10. Most of the people (>80%) surveyed were also on reflux medications, mainly proton pump inhibitors/PPIs (such as Pantoprazole, esomeprazole, omeprazole, lansoprazole or rabeprazole). These medications were rated by those surveyed to be very effective at managing reflux symptoms (with an average rating of 8/10), but only if taken regularly.  For those with the most severe reflux symptoms not responsive to PPI’s , many were also taking  other reflux medications (such as gaviscon and nizatidine) and these were also thought to be moderately effective ( with average rating of 7/10).

Integrating Palliative Care into Scleroderma – Dr Laura Ross

Dr Laura Ross is a rheumatologist at St Vincent’s Melbourne and a McKenzie Research Fellow at the University of Melbourne. Laura was awarded her PhD by the University of Melbourne in 2023 and was awarded the Victorian Premier’s Award for Health & Medical Research in 2024 for this work. Since completing her PhD, Laura has continued to research various aspects of scleroderma, including heart and skeletal muscle disease in scleroderma, gastrointestinal symptoms and how we can design better trials to discover much-needed treatments.

One of her recent areas of research has been the unmet burden of symptoms that people with Scleroderma live with and how to address these needs. Many people with scleroderma experience ongoing symptoms such as breathlessness, fatigue and gastrointestinal problems, even when their disease is otherwise well managed.

To help address this, she has developed a clinical and research program that integrates palliative care into routine scleroderma care, in close collaboration with the Palliative Care Unit at St Vincent’s Hospital in particular Dr Julie Mc Donald who is currently a PhD student under Laura’s supervision.

Palliative care focuses on improving quality of life by helping people manage symptoms, plan ahead, and access practical and emotional support. Importantly, it can be helpful at any stage of illness and is provided alongside specialist rheumatology care.

Integrated palliative care is now recommended internationally for many long-term conditions, including chronic heart and lung disease. This approach recognises that care focused on symptom relief and daily wellbeing can reduce the burden of chronic illness for patients and families, improve quality of life, and sometimes even improve survival.

At St Vincent’s, she runs a fortnightly integrated Scleroderma Supportive Care Clinic, staffed by a specialist Palliative Care & Respiratory Physician, alongside the usual Scleroderma Clinic. This allows patients and their families to see their rheumatologist and palliative care physician on the same day.

Research has shown us that these patients who have attended this clinic value:

• Dedicated time to focus on difficult symptoms
• Developing personalised symptom management plans
• Improved access to community and home-based supports
• Involvement of family members in their care, if they wish.

The model of care is based on the principle that palliative care should work hand-in-hand with specialist rheumatology care, providing holistic support for both patients and their families.

Together with other researchers at St Vincent’s Hospital, Laura has published several research studies describing this model of care and the experiences of patients and their carers. These studies help build the evidence for integrating palliative care into routine scleroderma care and support wider adoption of this approach.

1. Quantifying the Need for Specialist Palliative Care Management in Patients with Systemic Sclerosis. Ross L, McDonald J, Hansen D et al Arthritis Care Res 2024 76(7) 964-972
2. Examining the Case for Palliative Care in Patients With Systemic Sclerosis. McDonald J, Ross L, Wicks C, Philip J J Rheumatol 2024 51(10) 957-963
3. Early, integrated systemic sclerosis palliative care for patients and their caregivers: description of a new model of care. McDonald J, Wicks C, Ross L Rheumatol Adv Pract 2025 9(2) rkaf052
4. Patient and caregiver perspectives of an early integrated systemic sclerosis palliative care clinic: a qualitative study. Wicks C, McDonald J, Ross L Rheumatol Adv Pract 2025 9(4) rkaf098

Why This Matters

None of this work happens in isolation. It is made possible through the combined efforts of clinicians, researchers, trial participants and the ongoing support of Scleroderma Victoria and Scleroderma Australia. Funding research, supporting specialist scleroderma nurses, contributing to the ASCS and enabling clinical trials are all critical investments that directly improve care, knowledge and outcomes for our community.

These projects demonstrate the very real impact of that support, translating research into better understanding, better symptom management and better lives for people living with scleroderma.