Data Driven and Patient Centred: A New Approach to MND Care

Among people with MND, no two cases are the same. The condition’s initial presentation, its progression and the treatment required to manage it are different for every patient.

Ensuring that all MND patients can access optimal care pathways is the focus of an upcoming research project led by Paula Carroll, a dietitian and coordinator of the Western Sydney Motor Neurone Disease Service at Auburn Hospital.

Supported by a 2026 Sydney Health Partners Clinical Research Fellowship, Paula and her team will develop a clinical quality registry for people with MND and redesign the Service’s existing model of care. The goal is to improve the treatment experiences for patients, families and clinicians alike.

The new clinical quality registry will monitor and report on clinical outcomes for patients who attend the Western Sydney Motor Neurone Disease Service, while the reimagined model of care will ensure that people with MND are receiving the right support at the right time. The work will combine research and clinical evidence with lived experience data, giving patients a voice in the MND care journey.

“As clinicians, we can think about what we would like, but when you actually speak to the patients, there’s often quite a difference in terms of what’s important to them,” Paula says.

“Hearing from patients about the sort of information we should collect, how we collect it and how we communicate the findings is going to be really important.”

The overarching aim of the research is to identify and address clinical practice gaps; enhance patient outcomes through the provision of more personalised, coordinated and equitable support; and improve data-driven decision making to support safety and quality of care.

It’s a timely response to a global increase in MND diagnoses: between 1990 and 2021, disease prevalence increased by 68%. By 2050, the economic burden is predicted to reach more than $7.5 billion. Each of these numbers represents real people living with a degenerative disease that still has no cure.

Sydney Health Partners’ Clinical Research Fellowships support early career clinicians to pursue translational clinical or health services research that improves health care delivery. The 2026 scheme has been made possible by support from Equity Trustees, a major Australian independent trustee and executor company, that also supports health and medical research. This year’s Fellowships have a particular focus on supporting research into Alzheimer’s disease and motor neurone disease.

As one of two fellowships, Paula will receive $160,000 over two years supported by the Jane Frances Hayes and Frederick William Hayes Charitable Trust as managed by Equity Trustees. This funding covers protected research time, a professional development budget, opportunities to engage with academic and clinical networks, and access to Sydney Health Partners’ implementation science and consumer partnerships training and resources.

“This is work that I’ve wanted to do from when I started in this role, but the role is so busy and so complex that I haven’t been able to carve out the time,” Paula says.

The project will provide a foundation on which future MND projects can be built, both at Auburn Hospital and within other MND services across Australia.