GenV
GenV’s ‘Big Idea’: Helping Solve Complex Problems Facing Children and Adults
A landmark longitudinal study in Victoria is pursuing an ambitious goal: to transform the health and wellbeing of children and their parents by understanding the factors that impact them, and finding better ways to treat and prevent these issues. BioGrid is supporting this effort with its expertise in data governance and linkage.
GenV (Generation Victoria) comprises four main elements:
- Large parallel child and parent cohorts
- Comprehensive linked administrative and clinical data
- Antenatal and perinatal biosample collection
- Phenotypic data
GenV is a whole-population longitudinal cohort study and biobank, open to all children born in Victoria within a two-year window (October 2021 to October 2023) and their parents. With over 124,000 participants recruited to date, it is the largest study of its kind ever undertaken in Australia, aimed at facilitating both discovery and interventional research[1].
Led by the Murdoch Children’s Research Institute (MCRI), GenV is an international research asset supported by The Royal Children’s Hospital, The University of Melbourne, and funded by the Paul Ramsay Foundation, the Victorian State Government, The Royal Children’s Hospital Foundation and Murdoch Children’s Research Institute.
GenV collaborates with universities, research institutes, hospitals and pathology services across Victoria, and actively seeks input from parents, communities and organisations at every step.
GenV Biobank – Supporting Biological Research
A unique feature of GenV is its biosample collection, which includes:
- Direct collection from participants (saliva, infant stool, breast milk), and
- Residual clinical biosamples (pregnancy serum and plasma, Group B Streptococcus (GBS) swabs, and newborn screening blood spots) already collected by Victorian pathology providers.
Eight Victorian pathology providers contributed excess residual clinical samples, stored in de-identified tubes (each tube has a unique barcode that can be matched to an individual by the pathology provider). These samples are housed in a purpose-built, automated -80 °C freezer at the Melbourne Children’s Bioresource Centre, Royal Children’s Hospital.
GenV participants’ biosamples are identified by a linkage process that involves the matching of GenV participants to their barcode. Custodianship remains with each pathology provider until the linkage process is complete. Biosamples that have been identified as belonging to GenV consented participants then transfer to the custodianship of GenV.
To make the most of GenV’s biosamples, we partner with the best. BioGrid’s expertise ensures every sample is securely linked and ready to drive discovery that improves lives."
Professor Richard Saffery, Deputy Director, Biosciences, GenV
BioGrid – Enabling Secure Linkage
BioGrid supports the linkage of stored residual clinical biosamples to GenV participants. BioGrid acts as a ‘secure bridge’ between:
- Pathology providers (who hold biosample identifiers), and
- GenV (who hold consented participant identifiers).
Using BioGrid’s secure data sharing platform and proven record matching, the linkage is conducted under strict ethical governance and data sharing agreements. BioGrid engages with the pathology providers to access biosample identifiers and match them with GenV participant identifiers within its secure infrastructure.
BioGrid uses LinXmart record matching technology and extensive manual clerical review to ensure each match is accurate.
BioGrid is delighted to be supporting the GenV program as the trusted independent partner enabling GenV participants to be matched with their clinical biosamples."
Maureen Turner, CEO, BioGrid Australia
Solving complex data sharing challenges for the benefit of the community
BioGrid’s expertise in working with health information and developing governance frameworks for complex data sharing has been instrumental in enabling GenV to meet its objectives. This ensures that only biosamples belonging to consented participants are transferred to GenV.
Together with the GenV collected biosamples, the linked residual clinical biosamples form a unique resource available to Australian and international researchers. This supports studies of health and disease during pregnancy, child development, and facilitates bench-to-bedside translational research.