“What about young people?”

Researcher: Danielle Berkovic
Supervisor: Associate Professor Ilana Ackerman
Institution: Monash University
Project timeline: 2018-2021

More about the project…

Young people face unique challenges in living with arthritis. They report that unpredictable arthritis flares, fatigue, and reduced energy and strength pose challenges in the workplace. Young adulthood is an important transitional life phase, yet little research has been done exploring the issues specific to young people living with arthritis, especially work experiences, career progression and personal economic impact.

The aim of this PhD project is to explore the experiences of young people aged 18-50 who are living with and managing arthritis. This will be achieved by interviewing 40 young people with arthritis to gain an in-depth perspective about the work-related and lifestyle-related impacts of arthritis. An online cost diary will also be developed to capture the out-of-pocket healthcare costs.

Importantly, this PhD project will develop recommendations around the personal, financial, and work-related impacts of arthritis for clinicians treating young people, to improve provision of patient-centred care.

Development of a Disease Activity index in Systemic Sclerosis

Researcher: Laura Ross
Supervisor: Prof Mandana Nicpour
Institution: The University of Melbourne
Project timeline: 2017-2020

More about the project…

Scleroderma is an auto-immune disease that can affect many different organs and organ systems, including the skin, lungs, gastrointestinal tract, kidneys, heart and blood vessels. The most common symptom is a thickening and hardening of the skin, particularly of the hands and face. These symptoms are due to an overproduction of collagen which causes the connective tissue holding the cells of the joints, muscles, internal organs, and skin to harden and tighten.

The condition can lead to irreversible organ damage and eventually organ failure and death. Targeting therapy to the times when disease is active therefore could reduce disease progression and the likelihood of death.  At present however, there is no universally accepted measure for identifying disease activity in scleroderma.

This project will develop a Disease Activity Index for scleroderma, in collaboration with a group of Australian and international experts, to identify active disease in order to maximise the benefits of treatment and minimise irreversible organ damage.