The largest project of its kind in Australia that will answer the biggest questions facing a generation today has set a new global benchmark for child health research, new findings reveal.

The research, led from Murdoch Children’s Research Institute (MCRI), demonstrates for the first time that large, inclusive and multilingual research participation involving children and families is attainable on a grand scale.

Published in the International Journal of Epidemiology, the research profiles GenV (Generation Victoria), a whole-of-state research platform involving Victorian families to better support prediction, prevention and real-world solutions for health and wellbeing across a person’s life.

What is the GenV (Generation Victoria) cohort?

Almost 50,000 children and 74,000 parents have joined GenV, representing 30 per cent of all eligible births during the two-year birth window. Participants reflect the diversity of modern Victoria, spanning metropolitan, regional and rural communities, with 23 per cent living outside of metropolitan areas.

Families were invited to take part through 58 Victorian birthing hospitals and from their home. With information available in 26 languages, GenV ensured families from a wide range of cultural and linguistic backgrounds could participate.

GenV Design Lead Dr Libby Hughes said the cohort profile paper showed what was possible when equity was built into research design from the start.

“This research demonstrates it’s achievable to build a large, inclusive and multilingual population study at scale,” she said. “By working closely with families and birthing hospitals across Victoria, GenV has recruited children and adults who reflect the real diversity of the community. That level of representation is essential for research to produce findings that are relevant, fair and useful for everyone.”

Why was GenV started?

GenV was created to address a long-standing gap in Australia’s research landscape. Until now, Australia has lacked a living, population-scale platform able to understand and improve health and wellbeing in real time and across generations, laying the foundations for better prediction, prevention and early intervention for issues affecting all families.

By securely linking participant-provided information, such as bio samples and routinely collected health, education and environmental data, GenV provides a “build once, use many times” platform that can support discovery, early intervention, policy evaluation and real-world trials in Australia and globally. This helps identify risks earlier, test solutions faster and informs fairer, more effective action.

With the publication of both the GenV protocol and cohort profile papers, GenV is now largely described, peer-reviewed and citable. This enables researchers to assess the study design, cohort characteristics and data infrastructure, and to determine how GenV can inform future studies, collaborations and funding applications.

How is GenV making a difference to children’s health?

GenV Scientific Director and MCRI Professor Melissa Wake said the cohort profile marked an important milestone for the program.

“GenV was designed as long-term research infrastructure,” she said. “By securely this large bank of health information, it creates a foundation that researchers can use again and again to improve prediction, prevention and early intervention across childhood and adulthood. To help make a real difference to the lives of all Australians.”

Image: Professor Melissa Wake

GenV includes groups under-represented in many international mega-cohorts, including families with Southern, South-Eastern, Eastern and Western Asian heritages as well as strong First Nations representation. Over 30 per cent of parents were born overseas and at least 25 per cent spoke languages other than English at home.

Parents in the study range from 15 to 54 years, including more than 48,000 mothers, 25,000 fathers and all other parents and guardians, enabling research into adult health during key life stages. This represents a significant shift as study cohorts are designed primarily for mothers and children.

What sets GenV apart?

GenV Deputy Scientific Director and MCRI Professor Sharon Goldfeld said GenV’s scale and inclusivity set it apart internationally.

“Many large studies struggle to include families who face language, time or system barriers,” she said. “GenV shows that with the right design, implementation, people and partnerships, it’s possible to build research that reflects the whole population, can deliver on prevention, and supports better decision-making for health, education and social policy.”

Image: Professor Sharon Goldfeld

Families can still join GenV. Families with children born between 4 October 2021 and 3 October 2023, and live in Victoria, are eligible to join GenV.

Publication

Elizabeth K. Hughes, William Siero, Alisha Gülenç, Anna Fedyukova, Susan A. Clifford, Tony Frugier, Jatender Mohal, Naomi Schwarz, Daisy A. Shepherd, Melinda Barker, Zeffie Poulakis, Joanne M. Said, Natasha Zaritski, Sharon Goldfeld, Richard Saffery and Melissa Wake. ‘Cohort Profile: Generation Victoria (GenV),’ International Journal of Epidemiology. DOI: 10.1093/ije/dyag028

Available for interview

Dr Libby Hughes, GenV, Design Lead & Cohort Deputy

Professor Melissa Wake, GenV Scientific Director

Professor Sharon Goldfeld, MCRI, Theme Director of Population Health and GenV, Deputy Scientific Director

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About GenV

GenV (Generation Victoria) tracks the health and wellbeing of almost 125,000 consented participants (~50,000 children - most born October 2021-October 2023; 75,000 parents), which will grow over time. GenV is the largest and most inclusive cohort of its kind ever in Australia and one of the few of this size in the world. GenV's observation and testing capability will help researchers, policymakers and service providers solve the connected 21st-century challenges (like mental health, chronic illness, infection, climate) leading to better prediction, prevention, early intervention, treatment and equity for all Australians.

About Murdoch Children’s Research Institute

Murdoch Children’s Research Institute (MCRI) is one of the world’s top three child health research institutes, dedicated to improving the health of children and adolescents in Australia and around the world. In 2026 MCRI celebrates its 40th anniversary, marking four decades of transforming child health through research, discovery and innovation. Its breakthroughs have improved diagnosis, informed global vaccine strategies, advanced precision medicine, and continue to redefine what’s possible for sick children. MCRI is one of the only research institutes in Australia to offer genetic testing to help families find answers for children with previously undiagnosed conditions.

Funding

GenV is funded and led from Murdoch Children’s Research Institute, supported by The Royal Children’s Hospital and the University of Melbourne, with additional funding from the Paul Ramsay Foundation, the Victorian Government and The Royal Children’s Hospital Foundation, with research infrastructure funding from the Federal Government via the Medical Research Future Fund and the National Health and Medical Research Council.