TrialScreen and Scleroderma Australia are thrilled to announce the launch of “Scleroderma @ ResearchFriends”—a pioneering initiative designed to empower Australians living with scleroderma, along with their families, by connecting them more closely with clinical research initiatives and ongoing advancements from across the research community. By bringing together TrialScreen’s relationships with clinical trial sponsors and research scientists and Scleroderma Australia’s network of patients and family members impacted by this condition, Scleroderma @ ResearchFriends will create a dynamic, supportive space where patients, families, and researchers can connect directly through structured educational programs and information exchange. This strategic partnership will make research more accessible, improve patient participation in research activities, and help inform new scientific directions based on community needs and patient feedback.

The launch was held via a webinar, on February 28 2025, with engaging speakers who had valuable research insights and shared the importance of community engagement in their work.

Prof. Mandana Nikpour, who is a rheumatologist and a globally recognised scleroderma researcher spoke about the development of new outcome measures, screening tests, and clinical trials of new therapies. Her advocacy through leadership roles and her work with patient associations have led to increased awareness and changes in public policy. She highlighted the need to have the patient at the frontline of research.

Prof. Tony Kenna, is an immunologist with strong research interests in autoimmune diseases. Prof Kenna is based at QUT in the school of biomedical science and among the many hats he wears is the Australian Society for Medical Research president – the peak professional society representing health and medical researchers in Australia, with a long-established role in advocacy. His work is very much aligned with having the community inform future research priorities and seek out ways of overcoming other roadblocks to Australian led research.

Amanda Lawrie-Jones is the Chair of Scleroderma Australia, President of Scleroderma Victoria & a person with scleroderma. Amanda is also a member of the Victorian Disability Advisory Council where her connections to community, co-design and consumer engagement are paramount in the works she does.

Tara Haneveld is the Deputy Chair of Scleroderma Australia and the President of Scleroderma Queensland and has been living with scleroderma since 2010. Tara has been a patient advocate working as a clinical nurse consultant in the acute, sub acute and aged care sectors as well as leading education programs for the state government. The knowledge gained through-out her career places her in the perfect position to advocate for patient led research and work with  

Scleroderma@researchfriends community not only ensures that our scleroderma community’s voice will shape future research directions, but it also breaks down critical barriers to clinical trial access, placing Australia as an attractive destination for new scleroderma research.

Participants benefit from:

• Regular webinars and discussions with rheumatologists, immunologists, and clinical trial specialists to stay informed on the latest therapies.
• Updates from lab scientists dedicated to understanding scleroderma’s underlying mechanisms, including new insights into why some people develop this complex condition – and new targets for treatment.
• Insights from epidemiologists studying the patterns, long-term impacts, and predictors of scleroderma outcomes who can discuss the latest research findings.
• Support from allied health professionals and health planners focused on improving patients’ quality of life with available resources.
• Guidance from a dedicated community management team, helping patients navigate trial opportunities and the broader research landscape.
• Increased health literacy leading to better health outcomes for participants

Australians living with scleroderma, their families, and those newly diagnosed or seeking support are invited to join this unique community, which aims to transform scleroderma research through patient-driven engagement.

For more information about Scleroderma @ Research Friends or to join the community, please visit scleroderma.researchfriends.org 

About TrialScreen:

TrialScreen is a science-driven company that connects people with clinical research opportunities, working towards new treatments and better care by prioritising patient voices in the research process.