The Australian Scleroderma Cohort study (ASCS) was designed by ASIG in 2007, to create a detailed national database about people with scleroderma (SSc) and mixed connective tissue disease (MCTD). ASIG also established a biobank to collect and store bio specimens to provide novel insights into biomarkers and the genetic components of scleroderma. All people with SSc or MCTD attending any of the ASIG centres are offered the opportunity to participate in the ASCS and the biobank.

Both our national and state organisations here in Australia have had a long-standing relationship with ASIG, where at the heart of our collaboration has been supporting research and understanding of scleroderma.

Scleroderma Victoria has supported ASIG and the ASCS for over 18 years by providing funding for scleroderma nurses at Monash and St Vincent’s Hospitals to assist with data collection. In 2022, Scleroderma Australia also began contributing to scleroderma nurses at Westmead, Royal Hobart, Royal Adelaide, Fiona Stanley and Royal Hobart hospitals.

In our commitment to improve health outcomes for people with scleroderma, our national peak organisation, Scleroderma Australia, and our State Associations (VIC, NSW, & QLD) have funded a 3-year Fellowship through the University of Melbourne to expand the ASCS  biobank research. Congratulations to Associate Professor Amanda Saracino on being the recipient of this Fellowship!

Let’s hear from the recipient A/Prof Amanda Saracino:

“In September 2024, the new Dermatology Connective Tissue Disease Clinic commenced at St Vincent’s Hospital Melbourne. I now lead this clinic along with 3 Dermatologists in training, to provide specialist care and management for many and varied skin presentations of autoimmune connective tissue diseases. The clinic includes lots of patients with scleroderma – including both systemic sclerosis and morphoea (or localized scleroderma). I have been excited to commence thermography in the clinic, as a specialized and formal way of monitoring inflammation and therefore disease activity in morphoea; which can otherwise be difficult to monitor. Essentially, thermography measures heat, and will show active areas of morphoea as ‘hot spots’.

Alongside commencing the clinic, a lot of work has been happening in the background to set up our skin biobank in scleroderma. After investigating a variety of possible biobank locations, skin and blood collection, processing and storage methods, and liaising with national and international collaborators, we have now formalised our biobank agreement. This is the culmination of a substantial amount of reconnaissance work, and we are thrilled to be in a position to pilot the collection and storage of our first skin samples in the next month. The last several months have been very rewarding, and we have made exciting progress towards focused scleroderma skin research and our skin biobank. It is a pleasure to be involved in this work and I look forward to updating you again as we continue to make further progress in 2025!”

Professor Mandy Nikpour, the Executive Chair of the Australian Scleroderma Interest Group (ASIG) had this to say about the fellowship:

“We are enormously grateful to Scleroderma Australia and its Victorian, New South Wales and Queensland branches for supporting this fellowship. The skin is a major organ system affected in scleroderma, and it makes sense to look at the processes involved in skin thickening to decipher ways to more effectively treat this condition. A/Prof Amanda Saracino is a very worthy recipient of this fellowship and will dedicate her time to helping ASIG establish its skin biobank, whilst also leading discovery science studies using these tissues. The ultimate goal of this program of work is to improve outcomes for people affected by scleroderma”.