Transforming the future of scleroderma through research

In a quiet corner of Melbourne, a global force for progress in scleroderma research has been steadily growing – powered by compassion, collaboration, and the generosity of philanthropic supporters. At the centre of it all is Associate Professor Wendy Stevens, a consultant rheumatologist at St Vincent’s Hospital Melbourne and one of Australia’s most respected voices in scleroderma care and research. 

Scleroderma, or systemic sclerosis, is a rare autoimmune disease that causes hardening and scarring of the skin and internal organs. For many years, treatment options were limited. That began to change more than 17 years ago when Assoc. Prof. Stevens and Prof. Susanna Proudman from the Royal Adelaide Hospital established a national registry of scleroderma patients – supported by grants and philanthropy. Professor Mandana Nikpour later joined to lead research and mentor PhD and Masters students, and today, with contributions from dedicated teams at St Vincent’s Melbourne and partner sites in Adelaide, Perth and Sydney, this collaborative effort has produced more than 130 peer-reviewed publications, fuelling new discoveries and giving hope to people living with this complex condition. 

Two visionary donors, both personally impacted by scleroderma, have made transformational gifts that continue to drive this research forward. 

“What we’ve created at St Vincent’s is extraordinary – a national registry that started with a vision and a few hundred patients to become a recognised global resource and catalyst for life-saving projects that improve patient care,” said Associate Professor Stevens.  

“And the truth is, we couldn’t have done this without philanthropy,” she said. 

Holding detailed long-term data on nearly 3,000 patients, the national scleroderma registry is the only one of its kind in Australia and is internationally recognised as a major research resource. Each patient returns annually for a clinical review, contributing blood samples and DNA which are stored in the registry – offering invaluable insights into how the disease progresses over time. The powerful database drives vital research projects, informs new clinical practice guidelines, and enables meaningful international collaborations.  

“The registry underpins everything we do – clinical trials, screening programs, predictive research... it’s the engine room for progress,” said Assoc. Prof. Stevens. 

Donors driving the next generation of research leaders 

Thanks to philanthropic support, the next generation of scleroderma researchers is thriving at St Vincent’s under the mentorship of Assoc. Prof. Stevens, Prof. Nikpour and Prof. Proudman. Rising stars Dr Laura Ross and Dr Jess Fairley are leading groundbreaking investigations into the hidden cardiac impacts of scleroderma. 

Dr Ross’ discovery of under-recognised heart muscle disease in patients with scleroderma has sparked new investigations and earned her the Premier’s Award for Medical Research. Now a postdoctoral fellow, she continues to explore how the disease affects both quality of life and heart function, including the development of a dedicated palliative care clinic. 

Building on Dr Ross’ findings, Dr Fairley is investigating abnormal heart rhythms – another overlooked complication – with the potential to improve diagnosis and treatment for many patients. Her PhD work delves deeper into cardiac health and its role in overall wellbeing. 

Their findings are gaining international recognition, with presentations at the World Scleroderma Congress, the American College of Rheumatology, and EULAR (European Alliance of Associations for Rheumatology). 

“One project leads to another,” said Assoc. Prof. Stevens. “Laura’s work led to Jess’s research, which led to a whole new area exploring muscle function and fatigue. That’s the power of a well-supported research environment.” 

Transforming the future of scleroderma through research 

In a quiet corner of Melbourne, a global force for progress in scleroderma research has been steadily growing – powered by compassion, collaboration, and the generosity of philanthropic supporters. At the centre is Associate Professor Wendy Stevens, consultant rheumatologist at St Vincent’s Hospital Melbourne and one of Australia’s most respected voices in scleroderma care and research. 

Scleroderma, or systemic sclerosis, is a rare autoimmune disease that hardens and scars the skin and internal organs. For many years, treatment options were limited. That began to change 17 years ago when Assoc. Prof. Stevens and Prof. Susanna Proudman from the Royal Adelaide Hospital established a national registry of patients – supported by grants and philanthropy. Professor Mandana Nikpour later joined to lead research and mentor students. Today, with teams at St Vincent’s and partner sites in Adelaide, Perth and Sydney, this collaboration has produced more than 130 publications – fuelling discoveries and giving hope to people living with this complex condition. 

Two visionary donors, both personally impacted by scleroderma, have made transformational gifts that continue to drive the research forward. 

“What we’ve created at St Vincent’s is extraordinary – a registry that started with a vision and a few hundred patients to become a recognised global resource and catalyst for life-saving projects that improve patient care. And we couldn’t have done this without philanthropy.” said Associate Professor Stevens. 

Holding long-term data on nearly 3,000 patients, the national registry is the only one of its kind in Australia and is internationally recognised as a major research resource. Each patient returns annually for a clinical review, contributing blood samples and DNA – offering invaluable insights into how the disease progresses over time. This powerful database drives vital research, informs new clinical guidelines, and enables international collaborations. 

Donors driving the next generation of research leaders 

Thanks to philanthropy, the next generation of scleroderma researchers is thriving at St Vincent’s under the mentorship of Assoc. Prof. Stevens, Prof. Nikpour and Prof. Proudman. Rising stars Dr Laura Ross and Dr Jess Fairley are leading investigations into the hidden cardiac impacts of scleroderma. 

Dr Ross’ discovery of under-recognised heart muscle disease has sparked new research and earned her the Premier’s Award for Medical Research. Now a postdoctoral fellow, she continues to explore how the disease affects quality of life and heart function, including the development of a dedicated palliative care clinic. 

Building on her findings, Dr Fairley is investigating abnormal heart rhythms – another overlooked complication – with the potential to improve diagnosis and treatment. Her PhD delves deeper into cardiac health and its role in wellbeing. 

Their findings are also gaining international recognition, with presentations at the World Scleroderma Congress, the American College of Rheumatology, and EULAR (European Alliance of Associations for Rheumatology). 

To hear more about how you can support scleroderma research, please contact Anthony North at anthony.north@svha.org.au or call (03) 9231 3361.