Cohort Profile: Generation Victoria (GenV)

Generation Victoria (GenV) is a whole-of-state research platform established to improve child and adult health, development and wellbeing through discovery and interventional research. It comprises participant-provided and service-collected data and biosamples, with planned 5–6 yearly child and parent phenotypic waves. All children living in Victoria, Australia, born between 4 October 2021 and 3 October 2023 and their parents/guardians are eligible for GenV’s ‘Cohort 2020s’. Recruitment remains open. We describe the GenV ‘Foundation Set’—all participants recruited to 1 May 2025. Of eligible children, 29.7% had joined Cohort 2020s (43 853 children; 64 708 parents/guardians). Including our ‘Advance Cohort’ (born December 2020–October 2021), this rose to 49 686 children and 73 830 parents/guardians (48 119 birth parent/mothers; 25 398 fathers; 313 other parents/guardians); 761 (0.6%) had withdrawn. Cohort 2020s birth mothers/parents were aged 15–54 years, 23% lived in regional/rural areas, and 25% spoke non-English languages. Data and biosample collection includes baseline surveys, biosamples (e.g. saliva 81%, stool 16%, breastmilk 16%); optional interwave surveys (up to 33%); residual antenatal (up to 46%) and birth biosamples (up to 97%), and extensive linkage to services, administrative, and geospatial data (up to 98%). Numerous collaborative research projects are under way; end-user applications will commence 2026. See www.genv.org.au. Generation Victoria (GenV) was created to help solve today’s pressing challenging–rising rates of chronic disease, falling life expectancy, emergent physical, mental, and educational crises, and widening inequity [1–7]. Despite decades of research, noncommunicable diseases (often rooted early in life) continue to rise. This reflects a persistent gap between discovery and real-world population impact. To close this gap, prevention research needs very large, inclusive, long-term cohorts that can test how new approaches work in the real world. Lack of such contemporary mega-cohorts curtails the ability to translate data into population-level wisdom and action. GenV was designed meet this need as a single, statewide, open science platform that integrates discovery and interventional research within an entire population [8]. It combines features of a birth cohort and a panel study, creating large, parallel cohorts of children and parents. GenV comprises a statewide ‘Cohort 2020s’ (births 4 October 2021–3 October 2023) and an ‘Advance Cohort’ (births 5 December 2020–3 October 2021), with all participants recruited to 1 May 2025 collectively defined as the ‘Foundation Set’ for this profile. Cohort 2020s will be continuously recruited to reflect Victoria’s changing population. By linking existing and GenV-collected data (including biosamples and phenotypes) and enabling embedded large trials, GenV acts as a real-world testbed for scalable solutions to improve prediction, prevention, equity, affordability, and outcomes. Led from the Murdoch Children’s Research Institute (MCRI), with support from The Royal Children’s Hospital Melbourne and the University of Melbourne, GenV is funded to date by Victorian State Government, competitive, institutional, and philanthropic grants (see Funding statement). GenV is a statewide population-based cohort based in Victoria, Australia, designed for both discovery and intervention. The statewide Cohort 2020s is open to all children residing in Victoria and born 4 October 2021 to 3 October 2023, and their parents/guardians. Recruitment to Cohort 2020s is open indefinitely, including to those moving into Victoria. A smaller Advance Cohort comprising children born 5 December 2020 to 3 October 2021 and their parents/guardians, enabled fine-tuning and scaling of logistics ahead of statewide rollout. Recruitment to the Advance Cohort ended in June 2022. This profile describes both cohorts as recruited to 1 May 2025 (Foundation Set). While this phase resembles a traditional birth cohort, GenV’s ongoing design has features of a panel: whole-population representation, continuous recruitment to reflect migration and demographics, and ongoing relevance across two generations. Throughout the eligible birth period, GenV ascertained births daily via the Victorian Infant Hearing Screening Program (VIHSP). Most families were approached face-to-face in hospital shortly after birth, with the remainder contacted by phone/email/SMS. GenV continues to encourage families to join Cohort 2020s by raising awareness via children’s services, community groups, registries, and collaborative studies. Full recruitment and data collection procedures are described in the GenV protocol [8]. Figure 1 depicts the recruitment flow of GenV’s Cohort 2020s and combined cohorts to 1 May 2025. For this profile, ‘birth mother/parent’ was defined as a person who gave birth to the index child (including transgender and nonbinary birthing parents and surrogate mothers). ‘Father’ was defined as a person who identified as male and as a parent or father to the index child (including step and adoptive). ‘Other parent/guardian’ included all other types (e.g. nonbirthing mothers, grandparents). Collectively, all types are referred to as parents or parents/guardians. Participant recruitment flow for Cohort 2020s and combined Advance Cohort and Cohort 2020s as of May 2025. Plain text is Cohort 2020s only | Bold text is Advance Cohort and Cohort 2020s combined. For Cohort 2020s, 98.6% families of known eligible births had been invited to join; 62.0% of these joined or declined, while the remainder did not respond/decide. In total, 108 561 participants were enrolled including 43 853 children and 64 708 parents/guardians. Based on recruitment of at least one child and parent/guardian, this represents a response rate of 29.7% of eligible births, or 48.5% of those who decided. A further 5833 children and 9122 parents/guardians were recruited to the Advance Cohort, bringing the total participants enrolled to 123 516 (49 686 children, 73 830 parents/guardians). Tables 1 and 2 describe the cohort demographics for birth mothers/parents, fathers, and children, excluding those who withdrew use of data. Supplementary Table 1 describes the demographics of the entire GenV Parent Cohort inclusive of all genders and relationships (e.g. nonbirthing mothers, grandparents). Supplementary Tables 2 and 3 describe detailed cultural, linguistic, and socioeconomic profiles. Birth mother/parent and father characteristics. Parent who gave birth to the index child including nonbinary and transgender parents. Nonbirthing parents who identify as male. Parents of recruited siblings may be counted in duplicate to represent each associated birth (e.g. in the Advance Cohort and Cohort 2020s). Percentage of total with unknown/missing data (italicised throughout); remaining percentages within each category were calculated from only those with available data. At the time of the index child’s birth; all other variables were at the time of recruitment. Consultative Council on Obstetric and Paediatric Mortality and Morbidity (CCOPMM) aggregate data for births in 2021. Victorian Infant Hearing Screening Program (VIHSP) aggregate data for births 4 October 2021 to 3 October 2023. Australian Bureau of Statistics (ABS) 2021 Australian Census, up to 42-year-old female parents and 45-year-old male parents. Index of Relative Socio-economic Disadvantage derived from postcode [29]. See Supplementary Table 2 for additional indices. See Supplementary Table 3 for additional data on country of birth, ethnicity, and language. GenV respondents could select multiple ethnicities and languages. Includes separated, widowed, divorced. Dash (–) = Data were not available; NA = Not applicable. Cells ≤ 10 are confidentialized. Birth mother/parent and father characteristics. Parent who gave birth to the index child including nonbinary and transgender parents. Nonbirthing parents who identify as male. Parents of recruited siblings may be counted in duplicate to represent each associated birth (e.g. in the Advance Cohort and Cohort 2020s). Percentage of total with unknown/missing data (italicised throughout); remaining percentages within each category were calculated from only those with available data. At the time of the index child’s birth; all other variables were at the time of recruitment. Consultative Council on Obstetric and Paediatric Mortality and Morbidity (CCOPMM) aggregate data for births in 2021. Victorian Infant Hearing Screening Program (VIHSP) aggregate data for births 4 October 2021 to 3 October 2023. Australian Bureau of Statistics (ABS) 2021 Australian Census, up to 42-year-old female parents and 45-year-old male parents. Index of Relative Socio-economic Disadvantage derived from postcode [29]. See Supplementary Table 2 for additional indices. See Supplementary Table 3 for additional data on country of birth, ethnicity, and language. GenV respondents could select multiple ethnicities and languages. Includes separated, widowed, divorced. Dash (–) = Data were not available; NA = Not applicable. Cells ≤ 10 are confidentialized. Child characteristics. Victorian Infant Hearing Screening Program (VIHSP) aggregate data for births 4 October 2021 to 3 October 2023. Percentage of total with unknown/missing data (italicised throughout; remaining percentages within each category were calculated from only those with available data. Known multiple births and siblings combined = 3217. Consultative Council on Obstetric and Paediatric Mortality and Morbidity (CCOPMM) aggregate data for births in 2021. Mode of birth and birth weight were only collected for Cohort 2020s from mid-2022 for face-to-face in hospital recruitment. Missing data will be completed via data linkage in 2026. Dash (–) = Data are not available;. NA = Not applicable. Cells ≤ 10 are confidentialized. Child characteristics. Victorian Infant Hearing Screening Program (VIHSP) aggregate data for births 4 October 2021 to 3 October 2023. Percentage of total with unknown/missing data (italicised throughout; remaining percentages within each category were calculated from only those with available data. Known multiple births and siblings combined = 3217. Consultative Council on Obstetric and Paediatric Mortality and Morbidity (CCOPMM) aggregate data for births in 2021. Mode of birth and birth weight were only collected for Cohort 2020s from mid-2022 for face-to-face in hospital recruitment. Missing data will be completed via data linkage in 2026. Dash (–) = Data are not available;. NA = Not applicable. Cells ≤ 10 are confidentialized. To demonstrate representativeness of Cohort 2020s, we sourced the best available data for the Victorian population. (As recruitment to the Advance Cohort was limited, it was not expected to be representative.) Population data were: 1. Consultative Council on Obstetric and Paediatric Mortality and Morbidity (CCOPMM): CCOPMM releases annual data for all births in Victoria. We used data tables for births in 2021 [9]. 2. Victorian Infant Hearing Screening Program (VIHSP): VIHSP reaches >99% of all Victorian births and provided GenV’s sampling frame. We used aggregate data from all births recorded by VIHSP in the GenV eligible birth window. 3. Australian Bureau of Statistics (ABS) 2021 Australian Census: Using ABS TableBuilder [10] and Parent Indicator [11], we extracted data on Victorian mothers and fathers. While CCOPMM and VIHSP were closely equivalent to GenV’s eligible birthing population, ABS included parents of children of all ages in the household and was therefore more likely to diverge from GenV; however, it was the only source available for fathers and some variables (e.g. education). To reduce capturing parents of older children, maximum age was restricted to 42 for mothers and 45 for fathers (i.e. mean age +2 standard deviations of GenV birth mothers/parents and fathers, rounded up to nearest integer). GenV Cohort 2020s parents were representative of the population in regard to location of residence (e.g. metropolitan: 76.8% GenV birth mothers/parents v 76.0% VIHSP; 79.8% GenV fathers v 80.1% ABS), socio-economic disadvantage (e.g. most disadvantaged quintile: 11.9% GenV birth mothers/parents v 13.9% VIHSP), and identification as Aboriginal and/or Torres Strait Islander origin (1.4% GenV birth mothers/parents v 1.6% CCOPMM; 1.0% GenV fathers v 0.7% ABS). Among GenV birth mothers/parents, there was some underrepresentation of those who were younger (e.g.