Presented by Scleroderma @ Research Friends

Overview

Clinical trials are how we discover what works in healthcare, but for many people, what happens inside a trial is a mystery.

What does it take to run a good-quality study? Who decides what to test? Why do researchers sometimes do things that feel strange or impersonal?

In this Research Friends webinar, we go behind the scenes of clinical trials with Dr Stephanie Frade, exercise physiologist, researcher, and advocate, who brings both professional and lived experience of autoimmune disease.

Join us as Stephanie shares what it is really like to design and lead exercise trials for people living with autoimmune conditions. From ethics amendments and study protocols to unexpected participant reactions, this session unpacks the human side of research, including the parts most people never get to see.

Meet the Speaker

Dr Stephanie Frade is an accredited exercise physiologist, early-career researcher, and Managing Director of Immune Exercise Physiology. She works full-time as a postdoctoral researcher at the University of Sydney and Royal Prince Alfred Hospital, with a background in both clinical practice and research leadership.

Stephanie recently completed her PhD on the safety and effectiveness of exercise in Systemic Sclerosis and Systemic Lupus Erythematosus, and has published several peer-reviewed studies exploring the lived experience of people with autoimmune conditions.

Through her work, she has examined how people with autoimmune conditions perceive exercise, including the barriers, fears, adaptations and motivations that shape engagement. Her approach is grounded in listening first and designing programs that work in real life, not just on paper.

Stephanie also lives with Systemic Lupus Erythematosus and has family members living with Systemic Sclerosis, Rheumatoid Arthritis and Coeliac Disease. Her lived experience gives her a unique, empathetic lens on research design and a deep commitment to ensuring trials are both evidence-based and human-centred. She also serves on the Scleroderma Australia Board and as Vice President of Scleroderma NSW.

What We’ll Explore

What really happens behind the scenes of a clinical trial
What it means to co-design a trial with people who live with the condition
What surprised participants in Stephanie’s trials and how lived experience strengthens scientific design and improves outcomes
What Stephanie’s research revealed about exercise preferences and barriers in people with scleroderma
What you can do if you are curious about research but not sure where to start

About Research Friends

Scleroderma @ Research Friends is a national partnership between TrialScreen and Scleroderma Australia, created to bring people living with scleroderma closer to research that matters. Whether you are a patient, supporter, or simply curious, this is your place to ask questions, learn more, and help shape the future of clinical research.

Who Should Attend

This session is for:

People living with scleroderma or other autoimmune conditions
Anyone curious about how clinical trials work
Those who have considered participating in research but did not know where to start
Health professionals or carers who want to better understand the research landscape

No prior knowledge is required. All questions are welcome.