Theme 2: Natural history studies

Researchers at The University of Queensland Centre for MND Research are dedicated to improving our understanding of MND and how it affects both the body and daily life. Our work explores key aspects of MND that influence quality of life and disease progression, helping us uncover biomarkers, refine disease measurements, and ultimately drive new therapies.

MND is a complex disease that impacts metabolism, movement, brain function, and genetic pathways in different ways. By studying these changes in detail, we aim to:

Better understand the lived experience of MND and how it affects individuals over time.
Develop new ways to measure disease progression using advanced imaging, digital technology, and molecular analysis.
Identify biomarkers that can help track the disease and improve clinical trial design.
Lay the groundwork for future treatments by uncovering biological pathways that may be targeted for therapy.

Why our studies matter

By improving how we measure MND progression, these studies contribute to the global effort to pave the way for:

Earlier and more accurate diagnoses
Stronger, data-driven clinical trials
New biomarkers that track disease changes more effectively

If you are interested in learning more about these studies or participating in research, please contact:

Dina Wickremeratne d.wickremeratne@uq.edu.au
Simran Kaur Sarao rbwh-neurologyresearch@health.qld.gov.au

Our team

Current studies

Below are some of the key studies currently underway, each contributing to our understanding of MND and shaping the future of research and treatment.

Understanding the impact of different types of MND on the brain and spinal cord

Led by: Dr Thomas Shaw (School of Electrical Engineering and Computer Science)

Why this matters: Different types of MND may affect the brain and spinal cord in distinct ways. Understanding these variations is crucial for developing targeted interventions and improving diagnostic accuracy.

What we are studying: The BeLong study uses advanced 3T and 7T imaging modalities to explore how different types of MND impact the nervous system. Conducted through the Centre for Advanced Imaging and the Herston Imaging Research Facility at the University of Queensland, this research aims to enhance our understanding of disease mechanisms.

Understanding how changes in metabolism and appetite can impact people with MND

Led by: Associate Professor Shyuan Ngo (AIBN) and Associate Professor Frederik Steyn (SBMS)

Why this matters: Many individuals with MND experience unexplained weight loss and metabolic changes, but we do not yet fully understand why. Since metabolism plays a key role in overall health, understanding these changes may help in designing better ways to track disease progression.

What we are studying: The MEND study is the world’s most comprehensive research project investigating metabolism in MND. It examines:

Whole-body metabolism – How energy is utilised throughout the body.
Energy use by muscles and nerves – Understanding how these tissues process and consume energy.
Appetite regulation – Investigating why hunger and food intake change in MND.

Utilising digital technologies to support movement in MND

Led by: Associate Professor Taylor Dick (SBMS)

Why this matters: Loss of mobility is a significant challenge in MND. Emerging digital technologies, such as exoskeletons, may assist movement, but their effectiveness for individuals with MND requires further exploration.

What we are studying: The iMove study evaluates the Biomotum Exoskeleton System, a wearable device designed to aid ankle movement. Researchers have identified specific gait disruptions unique to different types of MND, which could lead to the development of prognostic biomarkers for the disease.

Tracking movement with digital devices to improve disease monitoring and clinical trial design

Led by: Associate Professor Frederik Steyn, Associate Professor Shyuan Ngo, and Dr Cory Holdom

Why this matters: MND leads to a gradual loss of movement. Wearable digital devices, such as wrist-based actigraphy monitors, show promise in tracking movement in daily life and may serve as biomarkers for disease progression.

What we are studying: The TRAC MND study investigates how wrist-worn actigraphy devices can monitor movement in real-world settings. Through global collaborations, the study aims to:

Enhance measurement of movement changes in MND which in turn can be used to simplify clinical monitoring, especially for those unable to attend regular in-clinic assessments.
Improve clinical trial design by incorporating real-life activity data.

RBWH-led natural history studies

In addition to the studies above, researchers at Royal Brisbane and Women’s Hospital (RBWH) are conducting further investigator-led studies that explore key aspects of MND progression. These studies focus on:

Neuroimaging and PET Studies in MND – Using advanced imaging to better understand brain changes in MND.
Exploring High-Density Surface Electromyography (hd-EMG) as a Biomarker in MND – Investigating new ways to measure motor neuron function and disease progression.
Rare Disease Mechanisms – Studying lesser-known neuromuscular conditions to uncover shared disease mechanisms and identify potential biomarkers.