05 December 2023

GenV (short for Generation Victoria) is a statewide research program that aims to create a picture of the health and wellbeing of an entire generation of Victorians using linked data. VAHI’s Centre for Victorian Data Linkage (CVDL) is partnering with the project to link data from more than 115,000 Victorian children and parents creating a linked data asset that will be used for years to come.

Led by the Murdoch Children’s Research Institute, this rich data asset has been developed to accelerate solutions to the major challenges facing children and adults including preterm birth, mental health, obesity, learning difficulties, allergies and many more. Rather than every new question being addressed by a new research project (a slow, costly and laborious approach), GenV can be seen as an engine to drive answers for researchers’ and policymakers’ many questions, faster and more efficiently than has been possible to date, all using the power of linked data.

The CVDL is collaborating with the GenV team to develop the enduring linked GenV asset, which will form a foundation of the research platform. The CVDL will use its secure linkage and integration technical environment to link the GenV participant information with Victorian administrative data, to provide richer and deeper population data. 

GenV remains open to every Victorian child born between October 2021 and October 2023 and their parents. In its ‘establishment’ phase, GenV focused on newborns in all 58 Victorian maternity hospitals, recruiting more than 115,000 participants.  This volume and diversity of participation not only strengthens the value of the data, but also reflects Victorians’ desire to be involved in research that will make a positive contribution for years to come. 

After consenting to join GenV, families are contacted a few times a year to check on the health and development of their child, as well as collecting biological samples such as breast milk, stool and saliva. GenV brings together information and samples already collected by services and combines it with parent-reported information collected from the cohort – making it low burden for families.

A unique opportunity

With GenV launched during the pandemic, its unique 2-year birth window will allow investigation of the health and wellbeing of children born during and post-COVID and identify the impact of the pandemic on children conceived during this time. GenV also unlocks the potential for new discoveries and for testing interventions. Already, over $30m in external grants have been awarded to researchers, including looking at the impacts of maternal COVID-19 vaccines, hip dysplasia and skills loss. The research generated will provide evidence-based preventative opportunities for all Australians for decades to come. 

GenV will ensure safe access for authorised researchers to the de-identified participant data linked with Victorian and Commonwealth administrative and service data. GenV’s First Nation's Advisory Group has also been pivotal.  Having a First Nations-led and informed approach to data governance and sovereignty will ensure First Nations authority over their data. GenV and CVDL are working together to enable an initial GenV linked data release during 2024 to selected users, with comprehensive linked data access enabled during 2025.

Professor Melissa Wake, Scientific Director of GenV, says its scale is a key strength.

“The goal of GenV has always been to help solve complex problems facing today’s children and parents. The collaboration with the CVDL will amplify the power of both GenV and CVDL-held data for over 115,000 GenV participants from all walks of life and languages, to help us achieve this goal. Families with a child born Oct 2021-Oct 2023 can join at any time - the GenV door is always open.”

To find out more about GenV and how to join, visit https://www.genv.org.au/.

If you would like to discuss opportunities for linked data to support your work, contact Sharon Williams, Manager of the Centre for Victorian Data Linkage via [email protected].