Emeritus Professor Wendy Brown, Emeritus Professor Margot Schofield, Professor Annette Dobson AM, Emeritus Professor Lois Bryson, Professor Julie Byles AO in 1996.
(Photo credit: The University of Queensland )
When a visionary study of Australian women's health was launched in the 1990s, high-quality data was scarce and crippling conditions such as endometriosis under-recognised.
Thirty years on, and the Australian Longitudinal Study on Women's Health (ALSWH) has grown into the largest study of its kind in Australia with plans to expand to ensure the nation's culturally diverse landscape is represented.
Founded on 22 April 1996, with an ambitious vision to gather scientific data, investigate all aspects of women's health and wellbeing and drive major health policies, the collaboration between The University of Queensland and University of Newcastle now tracks more than 57,000 women across regional, remote and metropolitan parts of Australia.
Professor Gita Mishra AO , Centre Director of UQ's Australian Women and Girls' Research Centre , has been involved since the beginning, joining UON's team as the study's first research academic.
She took the reins as UQ director of ALSWH in 2014, when founding director and distinguished biostatistician Professor Annette Dobson AM of UQ's Australian Women and Girls' Research Centre stepped down.
Professor Deborah Loxton , Director of UON's Centre for Women's Health Research and affiliate of Hunter Medical Research Institute (HMRI), was appointed as ALSWH UON Director in 2022, when founding investigator Professor Julie Byles AO retired.
Professor Mishra said ALSWH was one of the largest and longest-running projects of its kind ever conducted in Australia.
"What makes this study so special is we have followed women from their first period to menopause, giving us the ability to see how early life reproductive events influence health in midlife and beyond, and confirmed those patterns in women around the world," she said.
"For 30 years, dedicated women have completed regular surveys, provided biological samples and physical health measures, giving us invaluable knowledge to provide information across the lifespan."
Advocating for the major health challenges
ALSWH has produced many key findings, including the true extent of women affected by endometriosis, and the mental and physiological impacts of domestic violence that have been shown to last decades - if not for a lifetime.
Data from the study has further been used in more than 1200 scientific publications, produced nationally and internationally.
Over the past decade, ALSWH has expanded into an intergenerational study, widening to include the children of the youngest cohort so researchers can link children's health to the data of their mothers.
In total, data has been collected from 4 generations of women born in 1921-26, 1946-51, 1973-78, and 1989-95.
With a long future envisioned, the study is recruiting women who have migrated from South, Southeast, and Northeast Asian countries, as well as women born in Australia with ancestry from these regions.
The mammoth task of gathering scientific data is shared between the universities, with UON developing and sending out surveys and UQ linking survey data to administrative datasets such as Medicare and distributing to users across the globe.
Both sites bring significant expertise to bear on the data through complex analyses and jointly disseminate the research findings.
The study is funded through the Australian Government's Department of Health, Disability and Ageing.
A vision ahead of its time
Professor Mishra said a major strength was the study's capabilities to provide robust data on emerging women's health issues and test hypotheses in real time.
"Endometriosis has become a hot topic in recent years, but we were already asking study participants about the condition back in 2000," Professor Mishra said.
"If we hadn't asked these questions all those years ago, we wouldn't have the incredible resource of data we have today to answer questions of interest to the public and to the medical community."
In 2023, critical progression into understanding the prevalence of endometriosis was made when ALSWH data showed one in 7 Australian women aged 40-44 were diagnosed with the debilitating condition - a greater rate than previously reported.
The findings informed the Australian Institute of Health and Welfare's 2019 report on endometriosis, revealing unknown prevalence and hospitalisation rates.
Since the breakthrough, researchers have continued to build momentum, developing a simple 5-minute questionnaire using ALSWH data to address major endometriosis diagnostic and treatment delays.
"I'm really proud of this work and we hope this simple tool will reduce the average 6-to-8-year diagnostic delay," Professor Mishra said.
A lasting legacy
Professor Dobson said the studycollaborated closely with government in a way that no other research has.
"It has been a huge privilege to be involved in something that just keeps on going," Professor Dobson said.
"My interest is with obesity, which links to just about everything in women's health and is one of the biggest drivers of chronic disease."
In 2025, ALSWH data highlighted the need for effective preventative strategies and improved weight management for women to reduce the risk of chronic disease.
"We found women diagnosed with chronic conditions experienced a slowdown in annual weight gain, however, their weight gain still exceeded that of women without any chronic condition," Professor Dobson said.
"We often talk about smoking, but these days only about 10 per cent of women smoke.
"However, being overweight now plays a much bigger role in contributing to adverse health outcomes, which is why this area a major focus of our study."
Supporting recovery from domestic violence
Professor Loxton has been involved in the study for more than 20 years.
Using ALSWH data, her leading research into domestic violence was the first to show that mental and physical health issues can last decades, informing the National Plan to End Violence Against Women and Children 2022-2032.
"Because we've followed women from ages 18 to 76, we can clearly show the long‑term effects of violence, what can be done to mitigate that adverse impact, and share evidence with Government to hopefully make a difference," Professor Loxton said.
Additionally, new data in 2025 revealed that 2 or more chronic health conditions in the same person was more common in women to have experienced domestic violence , and the onset was more than 8 years earlier.
Professor Loxton said ALSWH only existed because of the participants who took the time to fill out surveys and generously share their experiences.
"There aren't many longitudinal studies in the world with more than 4 generations involved, and very few that have 135 people over the age of 100 still filling in surveys.
"ALSWH was founded at a time when women's health was viewed as little more than their reproductive organs, overlooking the broader social and psychological context in which she lives.
"We are now at a point where it's unusual for women's health to be viewed as solely involving reproductive health.
"A lot has changed since the 1990s, but there is always more research to be done."
ALSWH is recruiting
Find out if you or someone you know may be eligible to join the study. Visit the ALSWH website for more information .
