TRANSFORMING BRAIN INJURY CARE PATCHING UP BROKEN HEARTS
RETHINKING MENSTRUAL HEALTH
Research updates from all our Partners: ACU, Black Dog Institute, Children’s Cancer Institute, Garvan Institute of Medical Research, The George Institute of Global Health, Ingham Institute for Applied Medical Research, NeuRA, SESLHD, St Vincents Hospital Network, SWSLHD, Sydney Children’s Hospital Network, UNSW, UTS, Victor Chang Cardiac Research Institute, and WSU.
The official research magazine of Maridulu Budyari Gumal, the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE)
Our Partners
Each of our 15 Partners has a proven record of pioneering advancements across healthcare research, innovation and education.
It is the fusion of these different entities into one potent force that makes The Partnership unique - the whole is greater than the sum of the parts.
IN THIS ISSUE:
In-SPHERE, published three times a year, is the official research magazine of Maridulu Budyari Gumal, the Sydney Partnership for Health Education Research and Enterprise (SPHERE).
In-SPHERE showcases the work of our Clinical Themes and Platforms as well as our Partner Organisations.
Interim Executive Director: Professor Robert Gorkin
Operations Manager: Elizabeth Henness
Editorial Committee
Linda Music (Editor/Chief Writer)
Brigitte
Mehna
Bianca
Sophie
Maf
Stephanie
(Sub-Editor)
Meet SPHERE’s Interim Executive Director
With a focus on collaboration and continuity, Professor Robert Gorkin joins SPHERE as Interim Executive Director to help shape SPHERE’s direction.
You’ve recently joined SPHERE as the Interim Executive Director, bringing deep experience in innovation, partnerships, and impact. How do you see your role in helping shape SPHERE’s growth, and where do you think it can have the most influence?
We’re operating in a time of dynamic change. NSW Health has just released a new strategy, and a national medical research strategy is expected soon. Both highlight the need for more effective engagement in innovation, partnerships, and impact.
I see SPHERE’s greatest opportunity, and its biggest challenge, in working at the interfaces. We are well placed to bring together diverse partners to tackle long-standing pressures and inequities in the health system. If we can harness that collective goodwill and align around shared goals, we have a real chance to drive system-wide change. It’s about
working together to address problems that no single organisation can solve alone.
SPHERE has brought together a powerful alliance of researchers, clinicians, and partners. What do you think is the next evolution for a network like this, especially as health and medical research becomes more complex and interconnected?
SPHERE is built on a strong foundation shaped by the dedication of those who have guided its growth. This foundation positions us to keep evolving and expanding our impact
While there are many networks out there, few are quite like SPHERE. Our mission around translation is clear, and we do well in the early stages of innovation, moving from ideas to projects. The bigger challenge in Australia, and one we can help address, is what people often call the “last mile” of translation: embedding
research outcomes back into the health system or the community. We have an opportunity to create stronger pathways from innovation to implementation. We can be a testing ground for new solutions and an advocate to ensure those solutions reach the populations who need them. We already produce world-class research. The question is how do we ensure that work leads to meaningful change in people’s lives.
Professor Robert Gorkin
The recently released NSW Health and Medical Research Strategy lays out ambitious goals around innovation, equity, and translation. What stands out to you, and how might it influence the research and innovation landscape in NSW?
The strategy helps set a shared direction in what is otherwise a fragmented landscape. Between local health districts, primary health networks, community health organisations, industry, and research bodies, there is a lot of complexity. Having a clear strategy helps everyone align their work and collaborate more effectively.
There is a lot of interest in how the strategy will be operationalised. People want to avoid duplication and address gaps in areas like clinical trials and education. NSW Health plays a central role and has the ability to lead coordinated change. If implemented well, this strategy can help organisations meet their own goals while also working together to deliver care that supports people from their homes, through the health system, and back into the community.
We’re awaiting the release of the national health and medical research strategy. From your perspective, what should a truly future-focused strategy include if we want to build a more impactful and resilient research ecosystem in Australia?
We need to move away from thinking about research as something separate from the health system. Research can be a frontline service. If we can build better ways to integrate it into how care is delivered, we’ll see much greater impact.
Procurement is a key piece that often gets overlooked. Australia produces excellent research, but too often the outcomes aren’t adopted.
Other countries include procurement as part of the innovation process. If we create mechanisms to support not just doing the research, but also embedding its results in care models, we can close the loop. That would give us better incentives and ensure that research leads to real-world improvements.
You’ve worked across five continents and built a career that blends academia, industry, and not-for-profit work. What have those cross-sector, international experiences taught you about how to turn good ideas into real-world impact?
I’ve worked in a lot of places where we were trying to turn ideas into something real, whether it was a product, service, or system change. One of the biggest lessons is that it takes time, and it’s hard. Real impact often takes a decade or more.
Not every good idea leads to change. The ones that do usually have strong teams, people who can champion the idea, and an ability to adapt. Success often depends on how well an idea fits the ecosystem. Where I’ve seen things fail, it’s often because they were out of sync with their context or too dependent on a single person or process.
It also helps to know your own limitations. I’m very comfortable being the least knowledgeable person in the room, because that’s how you learn. Surrounding yourself with smart, passionate people is what drives progress.
You’ve described yourself as a “non-traditional academic” operating at the intersection of innovation, strategy, and impact. How has that shaped the way you work?
Much of my work has taken place in the spaces between disciplines or
organisations. That’s often where the most interesting opportunities are, but also where structure is lacking. I’m an engineer, not a scientist, so I use science to build things. I’ve never really belonged to one sector or role. That’s pushed me to step out of my comfort zone, take risks, and learn new skills to keep projects moving forward.
I’m drawn to projects that involve uncertainty but have real potential. These are often the ones where someone needs to step in, organise things, and help move the idea to the next stage. I’m good at spotting opportunities and getting things started. I’m also motivated by the pace of change in technology and knowledge. We live in a time where we can use these tools to improve lives, communities, and the environment. The key is figuring out how to apply them in meaningful ways.
When you’re not deep in strategy or innovation, what do you enjoy doing outside of work?
I’ve got three kids, aged 11, 8, and 5, so a lot of my downtime is spent ferrying them around. When I get time for myself, I enjoy surfing, bushcare, and what some might call an unusual hobby: bushcraft.
I’m really into primitive skills, like making stone tools and lighting fires with a bow drill. It’s a way to disconnect from technology and return to something very basic and hands-on. I became interested in cultural heritage after finding tools that were later confirmed by Traditional owners to be of Aboriginal origin while volunteering in bushcare. I’ve since been learning more about their significance and context.
There’s something satisfying about doing things with your hands, especially when they don’t involve screens or modern tools. It’s a good contrast to my work life.
Credit: ipobpa ( Istockphoto)
FROM OUR PARTNER: UNIVERSITY OF TECHNOLOGY, SYDNEY
Patching up broken hearts
With donor hearts scarce, researchers are developing personalised, bioprinted heart patches to offer new hope for heart failure patients.
By LINDA MUSIC
The numbers are staggering. Each year, over 10,000 people in Australia will suffer a heart attack. Of those who survive, one in four will go on to develop heart failure. Their only option: a heart transplant. However, with only about 120 heart transplants conducted in Australia each year, most of these people will die. Add to this the fact that 50 per cent of heart transplant recipients die within five years, it’s clear there needs to be a better solution.
That challenge has been the focus of Associate Professor Carmine Gentile, School of Biomedical Engineering, the University of Technology Sydney (UTS), and Group Leader of Cardiovascular Regeneration at the Heart Research Institute and UTS. Over the past 20 years, he has dedicated his research to addressing this problem and now believes his
team may have found a solution: a bioengineered heart patch developed from a patient’s own blood cells
Observations lead to an idea
It all began with A/Prof Gentile’s simple observation: traditional methods of studying and treating heart disease are often inadequate.
“Our research began with the recognition that current models for studying heart failure in patients, such as animal models or cell cultures in Petri dishes, fail to fully replicate the complexity of the human heart,” A/ Prof Gentile explains.
“Relying on these inadequate tools to study cardiovascular disease and treatments is a naive approach. Understanding the true development
and formation of the human heart, from neonatal stages to adulthood, encompassing both healthy and diseased conditions, offers insights into effective prevention and treatment strategies.”
Leveraging Australia’s largest human heart biobank, A/Prof Gentile and his multidisciplinary team set out to uncover the molecular, cellular, and extracellular secrets of healthy versus diseased heart tissues.
Their research led them to an ambitious new solution: bioprinting “mini hearts,” tiny, functional structures combining muscle cells and blood vessel cells that mimic the real thing. These miniature replicas, laden with both muscle cells and blood vessel components, represent a paradigm shift in cardiac regeneration. Like building blocks of life, these mini
FROM OUR PARTNER: UNIVERSITY OF TECHNOLOGY, SYDNEY
hearts are bioprinted layer by layer using a specialised 3D printer that deposits bio-ink, a blend of cells and hydrogels that mimic the natural environment of heart tissue.
“In the laboratory, we analyse patient-specific MRI and CT scans and create the shape of the 3D bioprinted tissue that will be applied onto the area that has been damaged.”
This patch, custom-built for each patient, isn’t just a physical match, it’s a biological one too. Thanks to new technologies, the team can now create patient-specific stem cells using a simple blood sample. What sets these mini hearts apart is their ability to interact and synchronise, just like their full-sized counterparts. Tailored to match the anatomical and
functional needs of individual patients, they hold promise as personalised patches that could restore heart function without the risks associated with traditional transplants.
“We can make the stem cells, and with the stem cells, we can make the patient-specific heart cells, required for the formation of healthy muscle and blood vessels,” A/Prof Gentile explains.
Then, by embedding these personalised cells into hydrogels — soft, water-rich materials similar to gelatin — the team ensures that the cells survive and function properly after printing.
Crucially, the team’s mini hearts are designed to beat in synchrony with the patient’s heart, avoiding deadly arrhythmias.
“If the cells are beating at a different rate, patients will develop arrhythmias and could die,” A/Prof Gentile cautions.
This innovation could offer a lifesaving alternative for thousands who would otherwise face an agonising wait on transplant lists. It could also bypass the complications of traditional transplants, such as immune rejection and the lifelong need for immunosuppressant drugs.
The road ahead
But the road ahead is not without challenges as A/Prof Gentile and his team navigate rigorous testing phases to ensure safety and efficacy.
“We are still in the pre-clinical
3D Printed heart with tissue printed hydrogel patch, Paul Brown, Carmine Gentile, Linda Dement, ’ You only get to die once’ for Pandemic Pivot, for Sydney Museum of Futures 2020
phase. We’ve shown that the patch can be generated according to the geometry of the patient’s heart, that it can be potentially applied onto the heart, and that it improves how the heart contracts. We are also looking at making it more durable in a way that we can test long-term effects from both efficacy and safety points of view,” A/Prof Gentile explains.
“The next challenge is to design and launch clinical trials. We need sufficient funding to support these trials, and we also need to determine where the trials will be conducted. Regulatory factors will determine whether this technology can be made available in Australia alone or internationally.”
The dream
Patients who undergo a heart transplant typically need about six
FROM OUR PARTNER: UNIVERSITY OF TECHNOLOGY, SYDNEY
months to recover. However, A/ Prof Gentile hopes that if the patch becomes the standard treatment, it could significantly shorten recovery times. This is because the flexible, elastic patch can be folded into a compact shape, inserted into the chest, and then unfolded and applied directly to the affected area of the heart using a minimally invasive procedure.
“Our dream is that the patient will be able to walk into the clinic in the morning and walk out in the afternoon with a new patch.”
It’s a bold vision: not just repairing hearts, but rebuilding them. Piece by piece, cell by cell, offering tens of thousands of people each year a chance at a new life. And with each breakthrough, that future moves a little closer to reality.
“Our dream is that the patient will be able to walk into the clinic in the morning and walk out in the afternoon with a new patch.”
Other applications
Mini hearts in cancer research
In addition to their role in understanding heart development, mini hearts are proving invaluable in studying the long-term cardiovascular effects of cancer treatment. While advances in cancer therapies have significantly increased survival rates, many of these survivors face an elevated risk of heart disease due to
the very treatments that saved their lives. One example is doxorubicin, a chemotherapy drug nicknamed the “Red Devil”—so-called for its red colour and potent cancer-fighting ability. Although effective, this drug can cause delayed cardiotoxicity, with some patients developing heart failure after treatment. However, not all patients respond to the drug in the same way, highlighting the urgent need for personalised testing tools. Mini hearts offer a promising platform for tailoring treatment strategies and long-term cardiac monitoring in cancer survivors, enabling researchers to better predict and prevent adverse cardiac outcomes.
Subjecting mini hearts to heart attacks
Beyond cancer-related research, mini hearts are also being used to model heart attacks in the lab.
A/Prof Gentile describes a project which involves creating a “heart attack in a test tube,” enabling researchers to mimic key heart attack conditions, such as fluctuating oxygen levels, to study how cardiac tissues respond to injury. This model has helped identify the damage caused by heart attacks and test potential protective therapies in a controlled, preclinical setting.
Associate Professor, Carmine Gentile, at the University of Technology, Sydney, and Group Leader of Cardiovascular Regeneration at the Heart Research Institute and UTS
“Children’sperspectivesare oftenundervaluedinthe research literature, and this perpetuateunderrepresentationcansociallyconstructed misconceptionsabouttheir experiences,”
ProfessorKatherineBoydell,
When children tell the story
How Digital Storytelling is opening new doors in mental health research
By PROFESSOR KATHERINE BOYDELL , Black Dog Institute
In an open, creative studio space, six children aged 9 to 12 sat down with filmmakers, researchers, and their imaginations. Over four consecutive Saturdays, they created short digital films that gave voice to something often hard to explain: anxiety.
Led by the Arts-based Knowledge Translation Lab at the Black Dog Institute, this study brought together researchers and creatives to explore how Digital Storytelling (DST) can offer children a powerful outlet to express their inner worlds. The children, all living with anxiety, participated in immersive DST workshops guided by filmmakers from The Digital Storytellers. The result? Deeply moving, personal films that reshaped how we might understand and talk about children’s mental health.
Telling Stories that Matter
DST is an arts-based method where participants create short videos, usually three to five minutes long, that combine personal narration with images, animation, or sound. These stories go beyond words, offering an emotional authenticity and personal voice often missing from traditional research methods. In mental health research, especially with children, DST is still underused, but this study shows its unique power.
“Children’s perspectives are often undervalued in the research literature, and this underrepresentation can perpetuate socially constructed misconceptions about their experiences,” explains Professor Katherine Boydell, Director of SPHERE’s Knowledge Translation Platform and Head of the Arts-based
Knowledge Translation lab at Black Dog Institute and lead investigator on the project.
“Our approach to studies with children and young people centres their experiences at the heart of our research. By prioritising
Professor Katherine Boydell
children’s voice and lived experience, we seek to address the dearth of their perspectives in mental health research.”
The stories
Susie’s “Now She Knows” used clay animation and stop-motion to tell the story of Clara, a girl who transforms into a mermaid during a storm. When caught in threatening weather, Clara dives deep underwater to find safety among colourful fish, representing how Susie relies on family and animals during anxious moments. Her 64-second film beautifully illustrates how finding a safe mental space can help weather emotional storms.
Beth’s “Volcano of Worries” combined hand-drawn animation with typographic elements to express her feelings about being different and worrying about others’ judgements.
Her erupting volcano metaphor captures the turbulence of anxiety, while her changing fonts and text animations are synchronised with her narration. Beth later shared that her story reflected her mixed cultural background and how her mother helped build her confidence.
Ellie’s “Plane” stood out for its complete absence of verbal narration, relying entirely on visual imagery and sound. Her 30-second piece depicted sunny skies suddenly darkening before returning to brightness, accompanied by music that shifts from light piano to heavy bass and back again. Without explanation, Ellie’s work powerfully communicated the unpredictable nature of anxiety: it comes and goes, sometimes without apparent reason.
These stories reveal how children use nature to safely explore and express their emotions. They also show
that not every story needs a happy ending. While Susie’s tale offered clear resolution, Beth and Ellie resisted tidy conclusions. Their anxiety didn’t need to be “fixed” in their narratives. It simply needed to be seen.
More Than Just a Method
Beyond the films themselves, the workshops created a space for fun, learning, and self-expression. As participant Hannah declared with arms stretched wide, “I had this much fun. Wait, even more fun than that.”
Others, like Nate, celebrated the creative skills they picked up along the way.
“I loved doing all the cool things. I’ve learned how to do digital storytelling, and I learned how to do stop-motion.”
Even Ellie, who spoke little
during the workshops, showed deep engagement through consistent attendance and a heartfelt hug for the filmmakers at the end.
Rethinking Research with Children
While DST offers unique benefits such as empowerment, creativity, and rich emotional insight, it also presents methodological challenges. The traditional storytelling structure, which often centres on resolution, may not align with the lived realities of children experiencing anxiety. Some stories in
this study defied the expectation of neat conclusions, instead capturing the often unpredictable and cyclical nature of emotional states.
“The research suggests that alternative narrative structures that embrace uncertainty and complexity, like the natural elements featured in the stories, might better capture the nuanced reality of mental health experiences. Perhaps simply acknowledging that anxiety comes and goes, and finding creative ways to observe this movement is a form of resolution itself,” says the
Learn more about the study:
project’s Research Manager, Dr Diane Macdonald.
The study also demonstrates that meaningful contributions from children in research do not always require spoken words. When given safe, creative spaces to communicate on their own terms, children are capable of sharing profound insights into their emotional worlds. These perspectives not only deepen understanding of mental health but also signal the value of inclusive, childled research practices.
Macdonald, D., Watfern, C., Boydell K.M. (2024) How not to talk about it: Using digital storytelling with children with anxiety. Methods in Psychology, vol 11 doi.org/10.1016/j.metip.2024.100159
Digi-Culture Dose for Kids - YouTube
Assistive Tech transforms brain injury care
Harnessing technology to support independence after Acquired Brain Injury
By: BIANCA BADOLATO, SPHERE
Acquired Brain Injury (ABI) doesn’t end with the initial trauma. For many, it can lead to challenges that persist long after the injury. Indeed, ABI can contribute to cognitive impairments that impact executive function and cause difficulties with memory, judgement, insight and the organisation of daily tasks, thereby impacting how those affected engage with the world.
This is where Assistive Technology can help. Assistive Technology is emerging as a powerful enabler in enhancing independence, improving communication, and supporting cognitive rehabilitation. Recognising its significance, the Brain Injury Rehabilitation Research Group at the Ingham Institute for Applied Medical Research established the Assistive Technology Hub (AT Hub).
Under the directorship of A/Prof Grahame Simpson and managed by Brendan Worne, the Assistive Technology Hub is using technology to help address cognitive issues.
SMART home research
The Assistive Technology Hub led the NSW arm of the SMARThome trial, which is redefining how individuals with acquired brain injury (ABI) are supported in their own homes. Jointly funded by the Transport Accident Commission Victoria and icare NSW, the collaboration among South Western Sydney Local Health District (SWSLHD), Ingham Institute, Royal Rehab Group and Monash University explored the use of everyday technology to transform lives.
The project uses a series of singlecase experimental designs to evaluate the effectiveness of smart home, mobile and wearable technologies in improving executive function following ABI. The process involves visiting the homes of individuals with acquired
Jayden with Pepper, the robot
FROM OUR PARTNER: INGHAM INSTITUTE FOR APPLIED MEDICAL RESEARCH
brain injuries to assess cognitive impairments and set personalised goals. The research team then implements individualised technology solutions tailored to each person’s needs.
What sets SMARThome apart is the use of accessible, mainstream technologies that many people already own. This not only makes the intervention more practical and userfriendly, but also positions it as a lowcost, scalable solution for cognitive rehabilitation.
“By using a single-case experimental design, where each participant acts as their own control, the team can precisely measure the impact of each intervention ensuring that the support is both meaningful and measurable,” Brendan explained.
He is pleased with the initial results which show that existing technologies can transform the lives of people with ABI by supporting and remotely monitoring their daily tasks. Using structured visual analysis and weighted average Tau-U statistics, analyses found that the SMARThome technology led to significant improvements for participants in achieving their goals, such as independently taking medication or independently initiating leisure activities to reduce boredom and promote greater occupation. The broader impact of this research includes improved health outcomes, enhanced quality of life, greater community participation and reduced reliance on carers.
AT- wRAP Project: expanding reach to regional clinicians
To expand on their current research and extend the impact of assistive technology beyond metropolitan areas, the Assistive Technology Hub’s
next project AT- wRAP is currently underway. Worne explains this threeyear initiative aims to support regional clinicians in implementing the use of technology to assist individuals with cognitive impairments. Through partnerships with University of Sydney, Ingham Institute, Charles Sturt University, Monash University and funded through icare NSW, the project is set to establish eight regional spokes supported by two project officers who are clinicians living in those areas, providing inperson training and technology showcases.
The AT- wRAP Project aims to support regional clinicians by working with them to help integrate this technology into clients’ day-to-day lives.
“By delivering local, face-toface training and education, and showcasing assistive technology to regional clinicians and their clients, the AT-wRAP initiative is building local capability and strengthening community health. Through connection, support, and technology, it empowers people with acquired brain injury to gain greater independence and confidence,” Brendan explains.
“We’re offering not only the right technology but also the training and assistance needed to ensure success.”
Looking ahead
Looking to the future, the Assistive Technology Hub has secured a position at the Ingham Institute’s eagerly anticipated Perich Centre for Robotics, Medical Devices & Health Technology. It is here the Assistive Technology Hub can turn their research into practice by providing clinical services to clients. This will ensure that the Assistive Technology Hub remains at the forefront of assistive technology innovation,
continuing to provide vital support to those living with brain injuries.
Brendan is excited about the Hub’s future.
“The Assistive Technology Hub is here to help people understand and make the most of technology to support their cognitive challenges.”
“The Assistive Technology Hub has exceeded expectations, developing sustainable research as well as service integration.”
The Hub’s initiatives, including the SMARThome Research, the ATwRAP project, and the integration of clinical services with the Perich Centre, have already led to improved outcomes for individuals with acquired brain injuries, helping them not only support critical cognitive functions but also preserve dignity and autonomy. With a strong emphasis on training, collaboration, and research, these programs are reshaping the landscape of cognitive rehabilitation, empowering recovery with tangible solutions to individuals living with Acquired Brain Injury.
Brendan Worne, the Assistive Technology Hub Manager
Tackling frailty in Australians with Heart Valve Disease
How a landmark national trial is transforming care for older adults with heart valve disease undergoing transcatheter procedures
By DR NICOLA STRAITON, St Vincent’s Hospital Network Sydney and Australian Catholic University
Credit: Sanja Grujic (istockphoto)
Every breath should be easy. But for hundreds of thousands of Australians, even a short walk or a flight of stairs can leave them gasping. For many, the culprit is heart valve disease—a growing, under-recognised threat to healthy ageing. With Australia’s population rapidly ageing, the burden of heart valve disease is set to rise dramatically. But a new national trial, launched by Dr Nicola Straiton from the St Vincent’s Health Network Sydney and Australian Catholic University’s Nursing Research Institute in early 2024, is giving hope to those most vulnerable: older adults living with frailty.
A hidden epidemic
Heart valve disease occurs when one or more of the heart’s valves no longer open or close properly, restricting blood flow and causing symptoms like
frailer, or more complex patients who may not be suitable for surgery.
Since 2008, TAVI procedures in Australia have skyrocketed from just 50 to an estimated 20,000 by the end of 2025. Advances in technology have also made it possible to treat mitral and tricuspid valve disease via transcatheter procedures, expanding options for more patients. However, as access grows, so too does the need to ensure better outcomes, particularly for patients living with frailty.
The frailty factor
Frailty is a distinctive health state related to the ageing process in which multiple body systems gradually lose their in-built reserves. Among patients with aortic stenosis, a common type of heart valve disease, undergoing transcatheter aortic valve implantation (TAVI), frailty is prevalent, affecting
tailored frailty management model of care underpinned by existing evidence-based clinical guidelines. Now, thanks to a national trial she’s leading, that model is being put to the test.
A new kind of trial: FRAIL-AS Response Trial
In February 2024, the FRAILAS Response Trial, short for Frailty Response in Aortic Stenosis, officially launched and to-date there are 14 hospitals in five Australian states, with more sites expected to join. The goal: to evaluate the impact of a tailored frailty management program on outcomes for older adults with aortic stenosis undergoing transcatheter aortic valve implantation.
Aortic stenosis affects one in eight older adults and occurs when the heart’s aortic valve narrows, restricting blood flow. It often leads
“Frailty is one of the strongest predictors of poor outcomes, yet it’s often overlooked or inadequately addressed in heart valve disease care.”
breathlessness, fatigue, and chest pain. In severe cases, without timely treatment, the condition can lead to heart failure or death.
In Australia, around 600,000 people are affected and this number is expected to climb steeply by 2060. Globally, heart valve disease cases are predicted to double by 2040 and triple by 2060. Yet, despite its prevalence, the condition remains underdiagnosed and undertreated, particularly in its early stages.
Treatment traditionally involved open-heart surgery. But in the last decade, a medical revolution has transformed the field: transcatheter procedures. These minimally invasive interventions, such as Transcatheter Aortic Valve Implantation (TAVI), have enabled safer treatment for older,
nearly one in three. Compared to their non-frail counterparts, these patients face significantly higher risks, including increased one-year mortality, more post-operative complications, prolonged hospital stays, and a reduced quality of life.
Despite this, most transcatheter heart valve disease treatment programs do not include dedicated frailty management care pathways.
“Frailty is one of the strongest predictors of poor outcomes, yet it’s often overlooked or inadequately addressed in heart valve disease care,” says Dr Nicola Straiton, a nurse scientist and Senior Research Fellow at the Nursing Research Institute.
Recognising this critical gap, Dr Straiton has led the development of a
to fatigue, chest pain, and heart failure. TAVI is the gold standard for many patients with aortic stenosis— particularly those who are older or frail. But as Dr Straiton notes, treating the valve isn’t always enough.
“The success of the procedure depends not only on the valve but on the whole person. That’s where our program comes in.”
The intervention: Frailty Response Program
The Frailty Response Program is a multicomponent, evidence-based model of care, specifically designed to support frail adults undergoing transcatheter aortic valve implantation (TAVI) and is aligned with established clinical guidelines.
It includes nutritional screening and support, geriatrician reviews to manage frailty-related risks, cardiac rehabilitation referrals to enhance strength and mobility, continuity of care post-discharge, and patient education about frailty to support independence and recovery.
Crucially, the program begins before the TAVI procedure and continues for three months afterwards, providing a continuum of support.
Trial design: evidence in action
The FRAIL-AS Response Trial is a cluster-randomised controlled study comparing outcomes between hospitals implementing the Frailty Response Program and those providing standard care. Grounded in implementation science, the trial is designed to facilitate the translation of existing frailty clinical guidelines into routine practice through evidenceinformed implementation strategies that enhance adoption, fidelity, and sustainability.
“It’s the first large-scale trial of its kind in Australia. We’re not just identifying frailty, we’re doing something about it,” says Dr Straiton.
The trial is supported by robust infrastructure and collaborative networks. It is embedded within the Nursing Research Institute and forms part of a broader heart valve disease and frailty research programs based at St Vincent’s Hospital, Sydney.
The multidisciplinary trial team includes cardiologists, geriatricians, nurses, allied health, researchers, and consumer representatives from Australia, Canada, and the United Kingdom, all united by a shared commitment to improving care and outcomes for individuals living with both heart valve disease and frailty.
From research to real-world change
This research has significance far beyond academic interest. With transcatheter procedures rapidly expanding, not just for aortic stenosis but also for mitral and tricuspid valve disease, health systems urgently need strategies to support an ageing, often frail population.
While previous studies have shown that frailty interventions can reduce complications and improve function, few have tested them within the context of TAVI or other transcatheter programs. That’s what makes FRAIL-AS unique: it combines rigorous science with real-world feasibility.
“Too often, we identify risks such as frailty, but don’t have systems in place to respond,” says Dr Peter Fahmy, Principal Investigator for the trial at Westmead Hospital and Norwest Private Hospital, Sydney.
“This trial is about building an evidence-based, scalable model that can be adopted across hospitals nationally.”
If successful, the FRAIL-AS Response Program could become a standard of care for patients
undergoing transcatheter procedures. It may also pave the way for similar models to be adapted in community care, general practice, and telehealth—key avenues for supporting frail patients closer to home.
A healthier future for an ageing nation
As Australia prepares for the healthcare challenges of an ageing population, initiatives such as the FRAIL-AS Response Trial offer a roadmap for better, more evidencebased care.
By addressing frailty head-on, the trial aims to shift the focus from simply treating disease to improving resilience, recovery, and quality of life. And in doing so, it offers a message of hope—not just for patients with heart valve disease, but for all older Australians striving for healthier, longer lives.
“We have the tools. Now we need to use them—not just to extend life, but to improve it,” says Dr Straiton.
For more on the FRAIL-AS Response Trial or heart valve disease research in Australia, visit https:// www.acu.edu.au/about-acu/institutes-academies-and-centres/nursing-research-institute/our-projects/ frail-as-response-trial
FRAIL-AS Response Trial Team at Westmead Hospital (L-R) A/Prof Peter Fahmy, Monique Bartlett, and Dr Nicola Straiton
Healing with respect: building trust in cancer care for Aboriginal people
By LINDA MUSIC
Credit: Claudine VM (istockphoto)
Cancer is one of the leading causes of death among Aboriginal and Torres Strait Islander people. Delayed diagnoses, lower screening access, particularly in rural and remote communities, and deep-rooted fears around navigating a system that has historically failed them are just some of the complex challenges they face.
“It’s difficult for Aboriginal and Torres Strait Islander people, coming into the cities from communities, to navigate the healthcare system,” says Associate Professor Julieann Coombes from the Guunu-maana (Heal) Aboriginal and Torres Strait Islander Health Program at The George Institute for Global Health and UNSW Sydney, who is leading a new program, The Safe Pathways model being piloted in South Western Sydney Local Health District.
“There are communication barriers and a lack of culturally appropriate care. These are major reasons many Aboriginal and Torres Strait Islander people feel apprehensive or fearful about engaging with the healthcare system.”
The Safe Pathways model of care aims to tackle these long-standing problems from multiple angles: by addressing systemic racism, improving cultural understanding among healthcare professionals, and embedding support for Aboriginal and Torres Strait Islander people throughout their cancer journey.
At the heart of the model is a dedicated Aboriginal Health Worker whose role is to support patients every step of the way, from understanding diagnoses and attending appointments to providing emotional and cultural support throughout treatment. But Safe Pathways goes further than individual support. It also includes the Building Cultural Capabilities (BCC) program, an intensive, year-long training course for non-Indigenous
health professionals that aims to create lasting change in how care is delivered.
Unlike many cultural awareness courses that are one-off workshops, BCC is structured across 12 months, starting with reading and videos on topics like Aboriginal and Torres Strait Islander health, intergenerational trauma, and communication. In the second month, participants come together for a group yarning session to reflect on their learnings, a key component of the program’s transformative approach.
“Yarning is something that has been done for thousands of years by Aboriginal and Torres Strait Islander people. It’s a way to come together as equals,” explains A/Prof Coombes.
“There’s a lot more listening, deep thinking, and learning. It’s not about talking to someone, it’s about learning with them. That’s how you build trust.”
This emphasis on trust and equality is central. Participants return every second month for a new yarning circle after engaging with material on different themes. This not only deepens their knowledge but allows participants to reflect on their own beliefs and biases, and how these affect clinical practice.
A common question that comes up in the early sessions is: What does it mean to be a culturally safe doctor?
“The BCC project gives them the tools and knowledge to start answering that for themselves. It’s about shifting their attitudes and practices, so the health system adjusts to the needs of Aboriginal and Torres Strait Islander people, not the other way around,” says A/Prof Coombes.
While Safe Pathways is still in its early days, its potential is enormous. The program builds on a successful pilot in the burns unit, where cultural safety training had a noticeable impact.
“They are totally different now in how they work with Aboriginal and Torres Strait Islander people,” A/Prof Coombes explains.
“We had great attendance. That team was small, about 17 or 18 people, but in the cancer space there will be around 160 people, including oncologists, social workers, even admin staff. The whole team needs to be involved.”
Crucially, Safe Pathways is not a top-down initiative. The program was developed in partnership with Aboriginal communities, Aboriginal organisations, Aboriginal families, the Aboriginal Health Unit at South Western Sydney Local Health District, and clinical leaders. This partnership is vital to its success.
“Without them on board, this would not work. The communities have helped guide the approach, and we’re hoping that trust and engagement continues to grow.”
The end goal is sustainability. While the full BCC program currently runs for 12 months, the hope is that it becomes a permanent feature of cancer care in the district, adaptable to different clinical areas and continually refined based on feedback and outcomes.
For A/Prof Coombes, the mission is clear: to build a healthcare system that truly supports Aboriginal and Torres Strait Islander patients — not just clinically, but culturally, emotionally, and spiritually.
Associate Professor, Julieann Coombs Credit: Hilary Wardhaugh Photography
Dr Sarah Hancock (Senior Postdoctoral Scientist) and Justin Moon (PhD Student)
Fuel, fat and the fight against cardiovascular disease
Decoding the metabolic pathways linking obesity, diabetes, and heart disease
By LINDA MUSIC
Cardiovascular disease remains the leading cause of death in Australia, particularly impacting individuals with type 2 diabetes and obesity, who face significantly higher risks. These metabolic conditions not only pose immediate health threats but also contribute to longterm damage at the molecular level to the heart and blood vessels. Understanding the precise mechanisms of this damage and how to prevent it is a pressing research priority.
To help tackle this, Professor Nigel Turner and his team at the Victor Chang Cardiac Research Institute have secured funding from the NSW Health Cardiovascular Research Capacity Program to investigate ways to reduce cardiovascular complications in people with diabetes and obesity. Their research is taking
a two-pronged approach: reducing the accumulation of toxic fats at the source and secondly, increasing metabolism to help cells more effectively use fats for energy instead of letting them build up.
Understanding nutrient uptake in cells
For years, Prof Turner has explored how nutrients are taken up and used by cells, with a particular interest in how these processes go wrong in conditions like obesity and type 2 diabetes. These metabolic disorders interfere with the normal action of insulin—a hormone that helps regulate the use of glucose and fats in the body.
Prof Turner explains that one of the major disruptions seen in diabetes is the abnormal accumulation of fats within organs not designed to store
large amounts of lipid, such as the heart, liver, pancreas, and muscles. This build-up can trigger harmful changes at the molecular level, including inflammation, oxidative stress, and mitochondrial dysfunction, all of which interfere with normal energy production and nutrient processing in cells.
While early studies focused on triglycerides, which are the main form of fat storage in the body, Prof Turner explains that these are now considered inert markers of excess fat. More recent work has turned attention to other types of lipids, including a class called sphingolipids. These complex fat molecules vary depending on the type of fatty acid attached to their backbone, and some forms have been strongly linked to insulin resistance and cardiovascular complications. While some sphingolipids appear to be especially harmful, others may
be neutral or even protective. By identifying which specific sphingolipids are involved in driving disease, the research aims to uncover new pathways for preventing or treating the complications of diabetes and obesity.
“What we’ve been trying to do is target those negative sphingolipids, while not depleting the others which have other important physiological roles. If we just wipe them all out there will be other negative effects.”
To avoid wiping out all sphingolipids, the team is developing a targeted approach that focuses only on the harmful types. The key lies in the enzyme ceramide synthase that attaches fatty acids to the sphingolipid backbone. It comes in six isoforms, each with a preference for specific fatty acids. This allows researchers to aim only at the isoforms responsible for producing the toxic variants.
Working with medicinal chemist Professor Jonathan Morris at
UNSW, the team have modified a drug originally used for multiple sclerosis. The original drug has broad effects on all six ceramide synthase isoforms, along with some immuneand cardiac-related side effects. By re-engineering its structure, they removed those unwanted interactions while retaining its ability to block the harmful ceramide synthase isoforms. A 2018 study showed the modified drug could selectively target one of the main isoforms linked to damaging sphingolipids.
Since then, the researchers have continued tweaking the molecule’s structure, adding small chemical changes to increase its selectivity or expand its action to other damaging isoforms. Several new versions are now showing promise. With support from NHMRC and NSW Health, the next step is testing these drug candidates in models of obesity, diabetes, and cardiovascular disease, with the goal of precisely preventing harmful lipid buildup while sparing
the beneficial ones. By blocking the synthesis of specific toxic lipids, it is hoped to reduce the damage caused by chronic fat overload.
Supercharging metabolism
The second major stream of work supported by NSW Health focuses on revving up the body’s calorie-burning machinery to prevent fat from building up in the wrong places—like the liver, heart, and muscles. The idea is simple: if cells can burn off more energy, there’s less left-over to be stored as harmful fat.
At the centre of this strategy is the mitochondria, the cell’s energy factories. To enhance their function, the team has been working on increasing levels of a key cellular molecule called Nicotinamide Adenine Dinucleotide (NAD). NAD plays a critical role in mitochondrial energy production, but its levels naturally decline with age and are also lower in conditions like obesity, type 2 diabetes, and fatty liver disease.
Professor Nigel Turner
While NAD supplements have become trendy, the science is still catching up. There’s promising evidence in animal studies that boosting NAD may reverse features of metabolic disease. But translating this into meaningful results in humans has been challenging. That’s where the team’s research comes in.
Instead of just flooding the body with NAD precursors, they’re testing smarter ways to keep those precursors from being broken down or excreted too quickly. By combining NADboosting compounds with others that stabilise or redirect them into useful pathways, they hope to deliver more reliable and lasting increases in NAD levels.
Through their latest grant, the team is testing these strategies in models of diabetes and cardiovascular disease, with the goal of supercharging the body’s fat-burning engines and reducing harmful lipid buildup. If successful, this approach could offer a new way to tackle the metabolic root causes of heart disease and related complications.
“By modifying different aspects of NAD metabolism, our goal is to more effectively increase NAD levels. The downstream effects of this are a better capacity to burn off calories and therefore limit the amount of toxic lipids that accumulate as a consequence,” Prof Turner explains.
By tackling both the source of harmful fat accumulation and enhancing the body’s ability to burn it off, Prof Turner’s research is advancing a powerful two-pronged strategy to reduce cardiovascular complications in people with diabetes and obesity. Whether it’s by selectively blocking toxic fat molecules or supercharging the body’s energy production through NAD-boosting interventions, this work is helping to unravel the complex metabolic drivers of heart disease. With promising early results and support from NSW Health, these innovative approaches could pave the way for more targeted and effective treatments that protect the heart from the inside out.
“By modifying different aspects of NAD metabolism, our goal is to more effectively increase NAD levels. The downstream effects of this are a better capacity to burn off calories and therefore we can limit the amount of toxic lipids that accumulate as a consequence.”
Professor Nigel Turner and Laura Choong (PhD student)
Leading the world in gene therapy research for spinal muscular atrophy
By KIDS RESEARCH, part of Sydney Children’s Hospitals Network
Aworld-leading research program has seen the Sydney Children’s Hospital, Randwick, become the first hospital globally to deliver a cutting-edge gene therapy for children up to six years old with spinal muscular atrophy (SMA).
SMA is a rare genetic disease causing progressive muscle weakness. Without intervention, the most severe types of SMA can have a life expectancy of less than two years old.
The international clinical trial, dubbed the SMART trial, investigated the safety and efficacy of gene therapy, Zolgensma®, in a cohort of 24 young children, ranging from nine months to six years old and weighing between 8.5 and 21 kg. These children had varying severities of SMA symptoms, with many already undergoing other treatments.
The trial builds on the success of the SPR1NT trial, which led to
Zolgensma® being listed on the Pharmaceutical Benefits Scheme (PBS) for use in eligible infants under nine months old with SMA who have specific gene variations. Unlike other treatments that require daily administration, the life-changing treatment is a one-time injection that delivers the missing gene causing SMA.
Thanks to the work by the Kids Advanced Therapeutics (KAT)
“This support made us the first site to be study-ready and because of this, were the first in the international study to dose a patient, and meant we were able to get outcomes for the patients who come to our hospital.”
program, the Sydney Children’s Hospital, Randwick, was successful in being chosen as a study site for the SMART trial and was the first site globally to dose its participants.
KAT’s role is to navigate complex regulatory procedures, handle feasibility assessments, submitting budgets, support governance and ethics approvals to streamline processes for innovative clinical trials.
Study co-lead, Professor Michelle Farrar, praised the KAT program for expediting the SMART trial through the hospital.
“Without the support of KAT, it would have taken twice as long to start up the study. Instead, we had a dedicated project officer from the KAT team who communicated with the sponsor and advocated for us to be a site for the study. They also helped us with the study start-up processes,” Professor Farrar said.
“This support made us the first site to be study-ready and because of this, were the first in the international study to dose a patient, and meant we were able to get outcomes for the patients who come to our hospital.”
The findings from the SMART trial,
Enabling research and bridging the knowledge gap for advanced therapies
The Kids Advanced Therapeutics (KAT) program is making a significant impact on children and young people with rare diseases by providing treatment options previously unavailable. It also educates families and healthcare professionals about emerging therapies. This
published in the prestigious journal Neurology, have been revolutionary in helping gather evidence to expand the use of the gene therapy for other cohorts of young children diagnosed with SMA.
“The results of the study were positive, with all participants reaching a stable disease trajectory,” Prof Farrar explained. “The study also provided us with an understanding of tolerability in this population and enabled tailored information to be provided based on characteristics of the child.”
The SMART trial is one example of how research enabling programs like KAT are helping accelerate novel research and enable access to innovative therapies across the Sydney Children’s Hospitals Network, ensuring children receive the best possible care.
The KAT program is operated through Kids Research, the research arm for the Sydney Children’s Hospitals Network, and is kindly supported by Luminesce Alliance and Sydney Children’s Hospitals Foundation.
Prof Farrar leads the Paediatric Neurology Research Group, an affiliated group with the University of NSW
includes gene therapy factsheets and educational videos that simplify complex information for patients, parents, and carers. In collaboration with Neurology Departments and the Brain Aid project, the program contributed to the Advanced Therapies Digital Handbook, a comprehensive online resource. They’ve launched an AAV Gene Therapy Education program and host regular
School of Clinical Medicine working within the Department of Neurology based at the Sydney Children’s Hospital, Randwick.
Read more about SPHERE Partner, the Sydney Children’s Hospitals Network at https://www.schn.health. nsw.gov.au/
(This article was first published on the Sydney Children’s Hospitals Network, Kids Research website: https://kr.schn. health.nsw.gov.au/news)
research seminars and webinars for clinical staff and researchers. These initiatives were supported by Sydney Children’s Hospitals Foundation, Luminesce Alliance, Cerebral Palsy Alliance, and Roche Australia. Explore these educational resources and programs at https://kr.schn. health.nsw.gov.au/our-research/ research-enablers/kat/education-resources
Professor Michelle Farrar
Supporting women in the workplace
Rethinking menstrual health at work
By LINDA MUSIC
For many women, period pain is just something to “get on with.” It’s pain that’s endured quietly, masked by painkillers and a brave face — in the classroom, at the office, during important meetings or life-defining exams. But what if we stopped treating menstrual pain as a minor inconvenience and started recognising it for what it often is: a serious health issue that can disrupt education, reduce workplace productivity, and unfairly limit opportunities?
This is exactly what Associate Professor Mike Armour and his team at Western Sydney University have been investigating.
Menstrual pain is more than pain
Despite how common menstrual conditions are, they’re still frequently dismissed or poorly managed, especially in professional settings.
Associate Professor, Mike Armour, at NICM Health Research Institute, Western Sydney University (WSU) says it’s not just about pain. Many young women experience a range of debilitating symptoms, from fatigue and nausea to headaches and digestive issues. And while medication and heat packs might help some, a significant number find little relief, pushing through work or school days while functioning far below their best.
“We often really focus on the pain aspect but even with primary dysmenorrhea, you can have severe fatigue, headaches, bloating, nausea, and diarrhoea. And so even if we are able to reduce the pain, sometimes the other symptoms are still really problematic,” explains A/Prof Armour.
These symptoms can have a cascading effect, not just on an individual’s well-being, but on their performance and future opportunities. He points out how period pain,
especially in younger women, can interfere with exams that ultimately shape their career paths, and yet very few accommodations exist.
“If you have really bad period pain and I don’t, you’re disadvantaged despite the fact that you’ve done nothing wrong. You might have studied harder than me, and yet we don’t really accommodate people very well.”
Part of the issue lies in the workplace itself, a space, A/Prof Armour says, still largely built for the “ideal worker.”
“’The ideal worker’ is basically a man. Someone who comes into the workplace, is there for the allotted hours, and really has nothing that’s going to affect their ability to work or take them away from work.”
But this ideal rarely fits the reality of women’s lives, especially when factoring in menstrual and reproductive health, caregiving
responsibilities, and social expectations.
The result? Many women end up showing up to work even when they’re unwell, a phenomenon known as presenteeism.
“Anyone who’s ever gone to work with the flu or even a hangover or a
migraine knows that you can be there physically, but it’s hard work,” Mike says.
“And because sick leave runs out really quickly, a lot of women will end up at work with menstrual symptoms so their productivity is reduced. Or, in the case of endometriosis, they’re often having to take a very large number of sick days.”
In Australia, that can average four days per month, far more than the standard annual sick leave allocation. When those days run out, many resort to unpaid leave or simply struggle through, often at a cost to their health and careers.
A/Prof Armour and his team have been exploring how flexible working practices could better support people with chronic conditions like endometriosis
Endometriosis affects one in seven women. It’s a common but often
misunderstood condition that can have devastating effects on people’s ability to work. In Australia alone, the economic cost of endometriosis is estimated at $9.7 billion per year— most of it from lost productivity.
Changing workplace policies
Too often, women living with endometriosis are forced to hide their pain or risk being labelled difficult or unreliable at work. A new workplace intervention, co-designed with both employees and employers, is offering an alternative: flexibility, education, and support.
At the heart of the Endo@Work initiative is a simple truth. People with endometriosis don’t want special treatment. They want to be able to manage their pain in ways that allow them to participate fully in working life. The program, led by NICM Health
Associate Professor, Mike Armour, Director of Research at NICM Health Research Institute
“While the pandemic was a very difficult time, it gave us a window into how much better life could be for people with endometriosis if we just adjusted our work environments.”
Research Institute PhD candidate, Dani Howe under the mentorship of A/Prof Armour, aims to help employers understand what support can look like in practice and why it matters.
The research is grounded in a realisation that emerged during the COVID-19 pandemic. During lockdowns, people with endometriosis reported improved productivity and greater job satisfaction.
“They had more access to flexibility, self-management tools like heat packs or ergonomic chairs, and could work when their bodies allowed,” said Dani.
“While the pandemic was a very difficult time, it gave us a window into how much better life could be for people with endometriosis if we just adjusted our work environments.”
The research
Motivated by this insight, the team conducted a global scoping review of workplace policies addressing menstruation, menopause, and menstrual disorders. What they found was striking. Only two papers directly addressed endometriosis in the workplace, despite the high prevalence and economic burden of the condition. Moreover, most existing policies focused on menopause, and very few had been evaluated for impact.
“There’s growing interest but very little evidence or implementation and that’s a huge gap,” explains Dani.
To understand what was needed in the Australian context, the researchers ran a national survey of 389 people with endometriosis who were currently
or recently employed. Alarmingly, only one percent had access to menstrual leave. However, those with flexible work options and supportive managers took fewer sick days and were more productive. Age was also a significant factor. Older workers were more likely to have access to flexibility, suggesting that such benefits are unevenly distributed.
“It really told us that workplace policy is needed to make support consistent, rather than dependent on seniority or having an understanding manager,” Dani said.
Focus group discussions with employees painted a vivid picture of life with endometriosis at work. Many reported suffering in silence, pushing through severe pain to avoid being penalised or stigmatised. Others said they had missed out on promotions or changed career paths altogether. Those who felt supported often credited one individual.
“We kept hearing the same thing: ‘Thank God I have a supportive manager,’” said Dani.
“But that’s not a reliable or fair system. People shouldn’t have to depend on luck or personal advocacy to get through the day.”
The team’s solution was to codesign a set of national guidelines that include education resources, workplace policies, and a new role called an Endo Champion, a dedicated person within the organisation who can advocate for employees, distribute materials, and help facilitate support when disclosure to a direct manager feels too risky. These draft guidelines
were then refined with input from employers across Australia.
The feedback revealed a disconnect. Many employers believed their organisations were already doing enough by offering flexible work but employees said these policies were either inaccessible or inconsistently applied.
“There’s clearly something cultural going on,” Dani explained.
“Policies might exist on paper, but people aren’t able to use them without fear of judgment or discrimination. That’s why education and cultural change are just as important as policy.”
The Endo@Work program is now being piloted across several WSU departments, with a mix of qualitative and quantitative data being collected to assess impact. The team hopes this will be the beginning of broader change.
“We want to reduce the invisible additional labour that so many people with endometriosis are doing just to stay employed,” said Dani.
“With the right policies, education, and support structures in place, we can make Australian workplaces more inclusive, productive, and humane—for everyone.”
PhD Candidate, Dani Howe
New tools for diagnosing childhood cancer and rare diseases
By JANE LEWIS, Children’s Cancer Institute
Most people take it for granted that if they or their child develop a medical condition, they will be quickly and accurately diagnosed – the first step to getting effective treatment. But that is not always possible, particularly in the case of childhood cancers and other rare genetic diseases.
To help address this shortcoming, researchers at Children’s Cancer Institute have developed a new suite of tools and resources accessible to scientists worldwide.
These resources assist scientists to identify mutations or changes in a patient’s genes (known as ‘genetic variants’) that may be causing a medical condition or, in the case of a cancer, driving the growth of that cancer. This information is vital for uncovering the cause of rare inherited diseases that often leave patients, parents and their clinician searching for answers. For childhood cancers, knowledge of the specific genetic variants found in a cancer can now guide clinicians to choose the most effective treatment tailored to the
individual child in their care.
Currently, many of the genetic variants that cause disease are not well understood. In particular, very little is known about a group known as ‘splice-altering variants’, despite research showing that up to one third of all disease-causing genetic variants belong to this group.
This is where Children’s Cancer Institute is making a major contribution. Its Computational Biology Group has recently published three important pieces of research in high-impact international journals.
Each of these offer valuable new insights and tools that help identify and understand splice-altering variants.
The first in this trio of papers, published in Genome Biology in 2023, details ‘Introme’, a highly innovative machine learning tool. “We developed Introme to help identify genetic variants that affect an often-overlooked process, gene splicing, which other tools have not been able to pick up on. With Introme now available, we expect to see a substantial increase in diagnosis rates of rare genetic diseases,” lead author, Patricia Sullivan, explains.
The team then published two papers in the American Journal of Human Genetics. The first presents a large database of often-overlooked variants, SpliceVarDB, which medical professionals can use to efficiently identify splice-altering variants affecting their patients, eliminating the need for extensive laboratory testing. Enabled by SpliceVarDB, the team’s third paper leverages datadriven insights to identify genetic variants that may cause abnormal splicing. By uncovering common patterns, the team developed practical rules to streamline variant assessment.
For the first time, clinicians now have clear and detailed guidance to evaluate the splicing potential of observed variants. This is crucial for those treating cancer or rare disease patients, where identifying whether a variant in a key gene contributes to the disease can be a decisive factor in diagnosis and treatment.
The true value of these studies becomes clear when viewed in the context of precision medicine, which is revolutionising the way genetic diseases, including cancer, are being treated. To provide an accurate diagnosis and treatment recommendation for a patient, precision medicine programs rely on detailed knowledge of which of the patient’s genes are altered, how they are altered, and the significance of these alterations.
“The promise of personalised medicine is that each patient receives a rapid and accurate diagnosis, leading to the right treatment at the right time” explains Associate Professor Mark Cowley, Head of the Computational Biology Group at Children’s Cancer Institute. “However, to successfully diagnose a genetic disease, we need tools that help us sift through thousands or even millions of genetic changes in each patient’s
genes, allowing us to focus on the few that could be driving the disease.”
The Zero Childhood Cancer Program (ZERO) − Australia’s national precision medicine program for children with cancer − has shown that using genetic analysis in this way, it is possible to identify diseasecausing genetic variants in more than 90% of children with cancer. In many cases, this knowledge can be used to provide an accurate diagnosis, and often personalised treatment recommendations as well, leading to improved survival.
“We want to know how we can close the gap to enable personalised care for every child,” said Associate Professor Cowley.
“We believe the answer lies in being able to identify every genetic variant that could be causing a patient’s disease – something that’s not currently possible because our understanding of the genome is incomplete.”
“Introme and the other resources developed by our team represent a huge step forward. These powerful new tools not only help us to accurately pinpoint clinically relevant genetic variants in individual patients, but are also allowing us to learn more about the mechanisms that drive childhood cancer, paving the way for the development of new targeted therapies.”
Introme and associated resources are freely available to clinicians and researchers online https://github.com/ CCICB/introme.
Improving health care for people with intellectual disability
By SAMANTHA DUNN & KATE BURKE, UNSW Sydney
Atoolkit co-produced by people with intellectual disability is helping to improve the quality of the health care they receive.
The GeneEQUAL toolkit was rolled out in 2023 to better educate healthcare workers on how to provide inclusive and respectful genetic health care, and to educate and empower people with intellectual disabilities.
The toolkit includes guidelines and videos on best practice and Easy Read booklets on genetic health care, which provides people with information and support around genetic testing and diagnosis. It was co-produced by UNSW researchers and individuals with intellectual disability and funded by NSW Health.
Since then, the toolkit has been viewed more than 13,000 times by
people in 70 countries.
An evaluation of the toolkit, the results of which were published in Genetics & Medicine, showed the resources have been welcomed by healthcare workers, who are changing their practice as a result, as well as those with intellectual disability.
96% of clinicians who responded to a survey about the toolkit agreed or strongly agreed that the toolkit would
Photo credit: UNSW Sydney
improve their quality of practice, and 95% agreed or strongly agreed that it was effective.
There was a statistically significant improvement in the respondents’ reported capability, opportunity, and motivation to deliver inclusive genetic health care after engaging with the toolkit.
This is welcome news to the team of researchers – Julie Loblinzk Refalo, Dr Emma Palmer and Professor Iva Strnadová – behind the GeneEQUAL project.
Dr Palmer, who is a clinical geneticist and academic at UNSW Medicine & Health, had seen firsthand the challenges people with intellectual disability faced when receiving support and information about genetic tests and diagnosis.
“Often they were excluded from the clinical appointments. The person they went with, a parent or support person, was talked at, not them. The language that was used was often very negative and stigmatising – talking about a person’s ‘mutation’ and using a deficit rather than a strengths-based framing,” Dr Palmer says.
Her concern led her to approach Prof. Strnadová and Mrs Loblinzk Refalo, academics from UNSW’s Disability Innovation Institute, and School of Education, who collaborate on projects to improve the wellbeing of people with intellectual disability.
Soon after, the researchers commenced the GeneEQUAL project to answer the question, ‘How can we make genetic health care better for people with intellectual disability?’
Starting out
The first step was talking with people with intellectual disability who had experienced genetic health care.
The researchers brought these initial findings to NSW Health, who provided funding support to continue the GeneEQUAL study and create the toolkit.
For clinicians, the toolkit has clear guidelines and videos, on providing inclusive, person-centred and respectful genetic health care.
In addition, there are GeneEQUAL Easy Read resources for people with intellectual disability, helping them to educate themselves about genetic health care, advocate for their rights and prepare for their appointments.
“We talked to healthcare workers and people with intellectual disability and they all loved the toolkit. The thing that differed was that some healthcare workers said that [some of the video examples we used] would never happen in real life, but every single person with intellectual disability said, ‘this has happened to me’ and that contrast is such a key message to get across,” says Dr Palmer.
“It’s about changing the whole mindset. I teach my students that we shouldn’t be seeing ourselves as
doctors telling the patient what to do – rather part of a partnership,” Dr Palmer says.
“Creating inclusive practices in genetic health care means that opportunity is created to translate a diagnosis into tailored health care, appropriate support, peer connections and reproductive planning,” she says.
A successful model
The success of GeneEQUAL provides a model for improving health care for people with intellectual disability, using co-production.
Diverse perspectives shaped the co-production of the toolkit from inception to completion, with participants including those with intellectual disability, self-advocate organisations, clinicians, government representatives, and a multidisciplinary team of researchers.
“In our inclusive research team, we always play to our strengths,” explained Mrs Loblinzk Refalo. And Prof. Strnadová adds: “The coproduction workshops we started with gave us ideas about what resources
GeneEQUAL’s Prof. Iva Strnadová, Mrs Julie Loblinzk Refalo and Dr Emma Palmer are delighted with the impact the GeneEQUAL toolkit has made for both clinicians and people with intellectual disability.
Photo credit: UNSW Sydney
PARTNER NEWS: UNIVERSITY OF NEW SOUTH WALES, SYDNEY
needed to be developed so that people with intellectual disability have accessible information explaining what genetic health care is, why it’s important, and how to make an appointment.”
During the next phase of coproduction workshops the team shared draft resources and then asked how they could be made better.
“We always received plenty of feedback,” says Mrs Loblinzk Refalo.
Prof. Strnadová adds: “The benefits of co-production are that people with intellectual disability have a say in everything, including what they think the issues are and how they can be fixed. Importantly, as a result of coproduction, people with intellectual disability have resources that they can truly use and receive better health care.”
The collaboration was a first for Dr Palmer, and she believes co-production is the best way to approach research.
“So much medical research is done by health researchers without authentically involving communities, especially priority populations. And all this does is encourage a ‘one-size fits all’ model of health care that ends up widening the health equity gap,” says Dr Palmer.
The team hopes the GeneEQUAL approach will be used in more projects.
“Our ever-growing team of co-researchers, health, disability studies, special education and ethics researchers keep coming up with ideas and new plans to fill the gaps that people with intellectual disability highlight to us,” says Dr Palmer.
“Our model is really transferable, and we truly hope it will inspire others.”
Mrs Loblinzk Refalo comments: “Our hopes for the future are so many that we would need many more lives to make them happen.”
Prof. Strnadová adds: “Our big
dream is to co-produce a ‘National Roadmap for Inclusion and Belonging of People with Intellectual Disability’ to make a real difference in people’s lives. Because including people with intellectual disability will make life better and enriching for everyone.”
The GeneEQUAL project has made it clear that co-production is not only feasible but a key to positive healthcare outcomes for those with intellectual disability.
The Disability Innovation Institute at UNSW has developed Coproduction in Action Guidelines. You can access them, including Easy Read versions, on their website.
This article was first published on UNSW website: https://www.unsw. edu.au/newsroom/news/2025/04/ it-works-gene-equal-is-improvinghealth-care-for-people-withintellectual-disability
Credit: UNSW Sydney
Thriving beyond survival
A new frontier in young cancer survivorship care
By LINDA MUSIC
For teenagers and young adults, cancer can derail life at a time when identity, independence, and future plans are just beginning to take shape. While survival rates in Australia are high, around 90% for those aged 15 to 25, the challenges don’t stop when treatment ends. Many young survivors face an unspoken second battle: navigating the psychological and cognitive toll of cancer in the years that follow.
A new Australian study, led by Associate Professor Ursula SansomDaly, a clinical psychologist at the
Sydney Youth Cancer Service and academic at UNSW Sydney, is set to change the way we understand and support this growing population. Backed by a $242,000 grant from the Prince of Wales Hospital Foundation, the research will codesign a model of survivorship care that better meets the psychological and neurocognitive needs of young people after cancer.
“Unfortunately, the data shows that adolescents and young adults are more likely to be experiencing mental health issues following cancer
treatment than both younger children and also older adults,” said A/Prof Sansom-Daly.
“It’s not surprising when you consider where they are developmentally. Adolescence and young adulthood are already peak periods for mental health challenges.”
While much of the focus in cancer care naturally centres on the treatment phase—radiotherapy, chemotherapy, surgery—the aftermath can be even more disruptive in a young person’s life. Survivors
Credit: KatarzynaBialasiewicz
often return to their everyday routines only to find that life doesn’t pick up where it left off. The emotional fallout can include ongoing anxiety, survivor’s guilt, and symptoms consistent with trauma or depression. Concentration issues and fatigue frequently interfere with education, social life, and career aspirations. Some young people even report experiencing thoughts of selfharm, highlighting just how critical the post-treatment period can be.
A/Prof Sansom-Daly compares the treatment period to being caught in constant motion.
“There’s a kind of momentum during treatment—you’re busy just showing up and getting through it. But it’s often in the aftermath, when young people try to return to everyday life, that the emotional toll really hits.”
She explains this is when young people often leave hospital care and feel “a bit unmoored or a bit lost at that time point, not quite sure how to put one foot in front of the other and to move forward.”
What makes this study particularly innovative is its focus on co-design. Young survivors will work directly with clinicians and researchers to develop tailored care pathways. The goal is a tiered or needs-based model of support: not every survivor requires intensive psychological intervention, but for those who do, timely, specialised services must be available and accessible.
“Some young people will require more comprehensive support, while others won’t. The key is being able to recognise who needs that extra care and making sure they actually receive it.”
Cognitive changes, often overlooked in traditional followup care, will also be a major focus. Problems with memory, attention,
and processing speed, sometimes called “chemo brain,” can persist long after treatment ends. These effects can be especially damaging in young adulthood, a period typically spent building academic foundations, professional skills, and social networks.
The study aims to create a roadmap for integrated care that can be scaled nationally and adapted internationally. Australia, with its network of youth-specific cancer services, is well-positioned to lead globally in survivorship research and practice.
“Australia is leading internationally in terms of the quality and innovation in youth cancer research,” she said.
“We are in many ways ‘punching above our weight’ in terms of the cancer care we offer our young people, but survivorship remains an area where we have a big data and research gap.”
Ultimately, this work is about more than just extending life—it’s about enhancing its quality. For young people who survive cancer, thriving shouldn’t be a long shot. It should be the expectation.
The project is supported by a $242,000 grant from the Prince of Wales Hospital Foundation and is being conducted at the Sydney Youth Cancer Service at Prince of Wales Hospital and Sydney Children’s Hospital, Randwick in the South Eastern Sydney Local Health District (SESLHD).
The team leading the grant includes several clinician-researchers within SPHERE including Dr Joanna Fardell (Deputy Director of the Behavioural Sciences Unit, UNSW; SPHERE Living Better With and After Cancer Fellow, and Clinical Neuropsychologist), and Dr Monica Tang (Medical Oncologist, Lead on the Prince of Wales Hospital Cancer Survivorship Program) combined with the multidisciplinary Sydney Youth Cancer Service team: Jess Ryan (NSW AYA clinical lead), Cath O’Dwyer and Fiona Maguire (Nursing), Sami Elayoubi (Social Work), Emily Rooleht (Clinical Psychology), UNSW academics (Skye McDonald and Amanda Olley), and lived experience expert and UNSW academic (Clarissa Schilstra).
Associate Professor Ursula Sansom-Daly
Helping patients navigate clinical trials
Garvan Institute of Medical Research is helping to make clinical trials options more accessible
By: LINDA MUSIC
Anew digital platform under development at the Garvan Institute of Medical Research is set to address a longstanding challenge in oncology: enabling patients to more easily understand and access clinical trials.
The Clinical Trials Navigator Project, known as Eva, is a web-based tool initially designed to support people with breast cancer. It aims to match
patients to relevant clinical trials and present complex medical information in clear, accessible language. By doing so, Eva seeks to empower patients to engage more confidently and meaningfully in conversations about their treatment options—particularly in relation to investigational therapies.
“Patients shouldn’t need a medical degree to make informed decisions about their care,” says Kate Saw,
Research Nurse at the Garvan Institute and member of the Eva development team.
The name Eva stems from a codesigned patient persona, developed in partnership with lived experience researchers to ground the tool in authentic user needs. While the initial rollout will target breast cancer, the underlying infrastructure is designed to scale across tumour types and
Credit: Daniel de la Hoz (iStockPhoto)
specialties.
The platform was conceived in response to consistent feedback from patients who reported feeling overwhelmed and under-informed when navigating clinical trial options.
“There’s still a lingering misconception that clinical trials are only for patients with no remaining treatment options,” Kate explains. “But increasingly, trials are being offered earlier in the care continuum—including in preventive settings. Patients deserve to be aware of these opportunities from the outset.”
With more than 100 breast cancer trials recruiting in New South Wales at any given time, even experienced clinicians can struggle to stay across the landscape. For patients, existing trial registries often prove difficult to navigate—laden with technical jargon and lacking contextual clarity. Eva is designed to bridge this gap.
A Smarter, Fairer Way
Eva integrates a clinical trial matching algorithm with a natural language model trained to generate plain-language summaries of trial protocols. After answering a series of guided questions about their diagnosis and treatment history, patients receive a tailored shortlist of potentially relevant trials, each accompanied by an easy-tounderstand summary that outlines the study’s purpose, eligibility, and participation details.
Importantly, Eva is not intended to replace clinical advice or pressure patients into trial participation. Instead, it is designed to facilitate more informed, two-way discussions between patients and their treating teams.
Kate MacDonald, a Lived Experience Researcher on the Eva team and someone currently
participating in her second clinical trial, notes how difficult it can be to access relevant information without institutional support.
“I wouldn’t have known where to begin without my oncologist, who happens to lead a research team,” MacDonald reflects. “Eva has the potential to open that same door for people regardless of where they live, their resources, or their connections. It could fundamentally change who gets access to trials.”
Centred on Equity and Empowerment
Equity of access is a guiding principle of the project. The Eva team recognises that clinical trial participation is often influenced by geography, health literacy, cultural background, and whether a patient’s oncologist is affiliated with a trial site. By centralising high-quality, unbiased information in an intuitive digital platform, Eva aims to reduce these disparities.
“Assumptions are too often made on behalf of patients, or clinical trials are not even presented as an option” Kate says. “But patients deserve the dignity of choice. They should be given the opportunity to decide for themselves.”
AI-Powered, Human-Centred
Eva is built on advanced machine learning and generative AI technologies, which now allow for scalable, real-time translation of clinical trial data into user-friendly formats. However, human insight remains fundamental to its design.
From the outset, the project has embraced a co-design methodology, incorporating feedback from patients, advocates, and lived experience researchers through interviews, focus groups, and iterative testing.
“Our consumer partners have
fundamentally shaped Eva—how it looks, how it communicates, and how it supports people,” Kate explains.
Looking ahead, the Eva platform is expected to include features tailored to clinicians and researchers, such as decision-support tools for molecular tumour boards and streamlined access to trial information for multidisciplinary team meetings.
Free from Commercial Influence
Unlike many commercial trialmatching services, which often prioritise sponsor-funded studies, Eva is being developed independently within a not-for-profit research environment. This ensures that trial results presented to patients are based solely on relevance and eligibility—not promotional funding.
“Our commitment is to neutrality and trust,” Kate says. “Patients will only see trials they are potentially eligible for. There’s no incentive to push one study over another.”
The Eva team is currently validating trial summaries with users and preparing for beta testing, with a pilot launch anticipated later this year. Ongoing concept development was supported by participation in SPHERE activities, which enabled cross-institutional collaboration and the formation of key partnerships.
“We’ve taken a deliberately methodical approach, anchored in co-design and integrity,” Kate says. “That’s what will make Eva sustainable. We’re not inventing something new; we’re connecting patients to what already exists, but in a way that’s compassionate, comprehensible, and just.”
Initially focused on breast cancer, Eva represents a model that could eventually serve patients across cancer types, bringing clarity and agency to those navigating an increasingly complex and fast-moving field of precision medicine.
of NeuRA’s
Advancing brain science with tech
Cutting-edge technology is helping researchers diagnose faster, treat smarter and reach more people.
By: KATANA SMITH, NeuRA
Technology has long been a key tool in our quest to better understand the brain, as well as diagnose, treat and prevent the conditions that affect it.
Now though, its rapid evolution and vast applications are providing new opportunities for our research teams at NeuRA and – ultimately – the people we’re working to help.
“Talk of technology and artificial intelligence (AI) can put some people on edge, but it’s applying science for a practical purpose,” said NeuRA CEO and Institute Director, Professor Matthew Kiernan, AM.
“Technology is a game-changer for neuroscience with benefits including the ability to analyse large data sets, collaborate globally, develop precision medicine, plus improved imaging and
diagnostics. This is all good news for our patients and the community.
“For example, AI is allowing researchers to go back and analyse blood samples that were collected in a UK study over about 20 years. That’s a massive job and would have a huge timeline and price tag if you were going to get an individual to do it, but with the support of technology, we have all this additional data about Alz-
Head
Preclinical NeuroPsychiatry Laboratory, Dr Tertia Purves-Tyson, with the new qPCR.
“This equipment will help us identify the underlying neurobiology of neurological and neuropsychiatric disorders, and to discover new treatment targets, develop biomarkers for diagnosis and/or to predict treatment response.”
heimer’s disease and for researchers working on a diagnostic test.”
Also in the lab, upgraded technology can make a huge difference, with the precision and accuracy of tasks, but also the speed at which they can be completed. Recently donations to NeuRA enabled the replacement and update of a qPCR machine, a critical piece of equipment for gene expression and genotyping studies.
“This equipment will help us identify the underlying neurobiology of
neurological and neuropsychiatric disorders, and to discover new treatment targets, develop biomarkers for diagnosis and/or to predict treatment response,” said Head of NeuRA’s Preclinical NeuroPsychiatry Laboratory, Dr Tertia Purves-Tyson.
“Thanks to this donation we were able to replace old equipment, and the upgrade will also improve the precision, accuracy and efficiency.”
At NeuRA Imaging, advances in technology supported the develop-
ment of new brain imaging methods last year. Director and Conjoint Senior Principal Scientist, Professor Caroline Rae, said functional conductivity imaging (FunCI) will assist with studies of the brain, brain disorders and the spinal cord.
“FunCI can detect the entire brain pathway that is involved in a task, not just the changes happening in the brain’s cortex,” Prof Rae said. “It combines high-resolution imaging with real-time data on tissue function.
Professor Sylvia Gustin with the Pain and Emotion Therapy Program she developed with Dr Nell Norman-Nott.
“This could lead to researchers tailoring treatments based on how your body is responding in real time, allowing doctors to personalise therapies, provide more precise treatments, faster recovery times and better health outcomes.”
While this can be hard for us to imagine, it’s not so long ago that the thought of a GP consult via a video call seemed impossible. Yet, telehealth is now used by many professionals to deliver telemedicine, but also support trials.
At the Centre for Pain IMPACT, Senior Principal Research Scientist at NeuRA and UNSW Science, Professor Sylvia Gustin, and Research Fellow and Associate Lecturer at NeuRA and UNSW, Dr Nell Norman-Nott, turned to technology in their quest to tackle the emotional side of chronic pain.
They developed the Pain and Emotion Therapy Program, which used a video-conferencing psychological consult and also a specially-developed mobile app to reshape the brain’s perception of pain and promote longterm relief.
“Our Pain and Emotion Therapy Program included an online psychological intervention, with internet-delivered dialectical behaviour therapy
or iDBT and selfdirected learning via a smartphone app,” Dr Norman-Nott said.
“Our research showed that eight guided skills training sessions, complemented by the use of the app, improved emotion dysregulation in individuals with chronic pain compared to usual treatment. More than this, at the 21-week follow-up these improvements were sustained and we also observed a significant, clinically meaningful reduction in pain intensity.
“Technology and online interventions like Pain and Emotion Therapy also address accessibility challenges faced by individuals with physical disabilities or those in rural and remote areas. For our trial, it enabled participants from every state in Australia to take part.”
Apps – that is, applications for smartphones and tablets – are increasingly used as a research tool. Across NeuRA research teams are developing and utilising apps AI, apps and opportunities for projects from wellbeing to ageing, falls and beyond.
While some are for research purposes and able to be used by a select few, others are going live to the public. Technology is also helping predict serious health risks.
Researchers from NeuRA and UNSW developed an AI algorithm that pairs with wearable devices to detect – and predict – health risks.
NeuRA Research Fellow and Lecturer in the UNSW School of Health Sciences, Dr Lloyd Chan, developed the gait biomarker algorithm and led research that has shown Watch Walk could identify and predict health risks using data from wrist-worn sensors.
“We have worked hard to develop this algorithm and demonstrate its ability to identify and predict a range of health risks, including dementia, stroke, falls and heart attack,” he said.
“Alongside that, we plan to extend the current research to broaden the application of this work, both to frail older people and the younger population.”
Watch Walk has now been licensed by Aussie tech brand, Spacetalk Limited, and will be taken global. “The licensing agreement is the next step for our research, making it accessible to the public,” Dr Chan said.
This article was first published in the Winter issue of NeuRA Magazine. https://neura.edu.au/magazines/neura-magazine-49
“Technology and online interventions like Pain and Emotion Therapy also address accessibility challenges faced by individuals with physical disabilities or those in rural and remote areas. For our trial, it enabled participants from every state in Australia to take part.”
Glenda Gartrell
Challenging the last taboo
By LINDA MUSIC
Long after many have stepped back, Glenda Gartrell is stepping up, challenging assumptions and championing voices too often ignored. A passionate force in both advocacy and research, Glenda has spent her life pushing boundaries—and at 86, she has no plans to stop.
Her commitment to change has been a life-long passion. In the 1970s and 80s, she was a driving force in the women’s movement, advocating for gender equality and justice. But her advocacy didn’t stop there. She served on the management committee for life sentence prisoners, contributed to animal welfare as a long-standing member of the CSIRO’s animal ethics committee, and helped shape public policy through her work on a ministerial advisory body on food safety.
Making a difference in research
It was this lifelong drive for practical reform that eventually led her into the world of medical research. When she first arrived at Royal North Shore Hospital, it wasn’t as a clinician or administrator, but as a volunteer. Starting in the Emergency Department (ED), Glenda quickly found herself drawn into research.
“The doctor doing research in ED didn’t have enough money to pay a research assistant,” she recalls.
“So, he went through the volunteer list, and in no time, his office was
staffed by volunteers seven days a week.”
Glenda was given a project monitoring lactate levels in emergency patients — an early indicator of serious infection. Each shift, she’d comb through triage notes to check if incoming patients met trial criteria.
“You have a blood test as soon as you come to ED, and they can
“It felt good to be part of something that mattered. It wasn’t research for a pharmaceutical company—it was for patients and the people treating them.”
immediately see the lactate level. There’s a very high correlation between that and infection,” she explains.
That study, she explains, went on to prove highly impactful, and is still in use today.
“I was speaking to a senior nurse at RPA, who told me how much that trial progressed. I had no idea at the time I was part of something that would end up being so useful.”
For Glenda, it wasn’t just the science that mattered—it was the intent.
“We weren’t researchers, but we were very much part of the research,” she says.
“It felt good to be part of something that mattered. It wasn’t research for a pharmaceutical company. It was for patients and the people treating them.”
Even when the pandemic forced her to step back, Glenda remained connected. She was honoured as a co-author on the research team, and even gave a presentation on the lived experience of osteoarthritis at the final results showcase.
“I was very excited to be named on the research team. It showed that our participation was extremely valued.”
She soon became involved in the UNSW Resilience Project, completing app-based activities and volunteering for genetic testing and blood sampling.
“I read about a study in America where researchers identified a gene common among people who had died with Alzheimer’s,” she says.
“I thought, this Australian study was timely. I’m extremely interested in how it all develops.”
The third taboo
Glenda doesn’t just contribute to research—she questions its assumptions and pushes its limits, especially around ageing, gender, and the quiet erasure of older women’s voices.
An active force in the women’s movement of the 1970s and 80s, Glenda spent years challenging
dominant narratives about gender and power. But despite her long history of activism, she found herself sidelined when she reached what society labels as “old age.”
“When we get to our 70s and 80s, we just disappear,” she says.
“Sure, there’s research out there. They know how many houses and cars we own and what our income is, but they don’t actually collect any data systematically on what our lived experiences are.”
Instead of retreating, Glenda turned this invisibility into fuel for action. She has made it her mission to help other older women speak up, especially about the topics society tends to shy away from. Her recent work tackles one of the last taboos: the sexuality of older women, a subject long ignored in both public discourse and research.
“We’ve broken the first taboo which was menstruation,” she says.
“The second taboo—menopause— is finally in the spotlight too, with women in high places talking about it and the medical system starting to take notice.”
“But the third taboo? That’s still left in the shadows. And it’s this: sexuality and ageing.”
For years, Glenda has been working to bring that subject into the light and her book ‘Getting On With It: What Is It? Ask an Older Woman’ is a book that aims to do just that. With stories from women in their 70s and 80s along with Glenda’s, the book is a perfect starting point for a conversation on sex and ageing.
“At this point all I’m asking for is that we start to talk about it. Hopefully then, researchers will be able to identify topics to research.
Glenda’s voice is a reminder that age is not a barrier to relevance, action, or influence. In a society too quick to overlook the value of experience, Glenda is living proof that lived experience is evidence — and that older women are not just witnesses to change, but vital agents of it. As she continues to ask bold questions and open space for honest conversations, Glenda invites us all to reconsider who we listen to, what we value, and how we create knowledge. And she’s not done yet. Not even close.
Glenda’s book is starting a conversation
Maridulu Budyari Gumal, Sydney Partnership for Health, Education, Research and Enterprise (SPHERE)
