Learn about GenV: your opportunity to create a healthier future GenV is a research project built by Victorian families for all families. If you join, you will contribute to healthier children, parents, and families in the future.
Improving care and development through world-class research GenV will work in partnership with Victoria’s health organisations to collect data that will enhance researchers' capacity to understand patient outcomes.
Comprehensive research for precision policy and service delivery GenV aims to transform how we conduct research into health and wellbeing, establishing the foundations for new approaches to data-led policy and strategy development, and the strengthening of service delivery.
Our achievements, partners and key people Learn more about GenV’s collaborative partnerships with leading universities, institutes, and service providers, and meet the people who help to bring our exciting vision to life.
Home\For researchers\Current GenV collaborations Back Current GenV collaborations Current GenV collaborations Parents and children who join GenV can also take part in other studies looking at important issues. Joining up GenV with other studies can increase their value. It also cuts down costs, effort and doubling-up. For example, GenV data could help a study look at the benefits of a new treatment for a much bigger group of children. All studies working with GenV have ethical approval. If you are asked to join another study, you decide if you want to take part at the time. See below some of the projects working with GenV or download a copy here. AIR or Oxygen for Preterm infants; AN Embedded trial (AIROPLANE) AIR or Oxygen for Preterm infants; AN Embedded trial (AIROPLANE)Some babies who are born early need oxygen to support their breathing in the first minutes of life. The AIROPLANE study is testing two oxygen levels that are in use in more than 20 hospitals across Victoria. They will find out if one oxygen level is better than the other. About the collaboration The AIROPLANE study and GenV are working together in many Victorian hospitals. AIROPLANE may link to GenV information for babies in both studies. Sharing information will help AIROPLANE see if there are any long-term benefits to the two oxygen levels. For GenV parents Who can join? You may already be part of AIROPLANE if: Your baby was born between 32 and 35 weeks of pregnancy Your baby needed breathing support in the first minutes of life What should you expect? You don’t need to do anything. If your baby was born early and needed breathing support at birth, you may have been included in the AIROPLANE study. By being a GenV family you can help the AIROPLANE study find out if one oxygen level is better than the other in the long term. contact airoplane Project website: http://www.airoplanetrial.org.au Contact email: airoplane.trial@mcri.edu.au Project lead: Associate Professor Louise Owen / Royal Women’s Hospital Learn more The AIROPLANE study – Information for Parents and Families Epi-Genomic Newborn Screening (EpiGNs) Epi-Genomic Newborn Screening (EpiGNs)Some children are born with rare diseases that are not always obvious at birth. The EpiGNs team are testing a new way of screening for rare diseases in newborn babies to help understand its benefits. This may help to improve early diagnosis so that children can get help they may need much earlier. About the collaboration EpiGNs and GenV are working together to help improve how rare diseases are found at birth. We hope this will help improve the newborn screening programs in use in hospitals around Australia and help reduce stress and anxiety for families. For GenV parents Who can join? You may already be part of EpiGNs if: You have joined GenV You have given GenV your permission for your sample(s) to be used for genetic testing What should you expect? You don’t need to do anything. By being a GenV family you can help the EpiGNs team learn more about screening for rare diseases. contact EpiGNs Project website: https://www.mcri.edu.au/research/strategic-collaborations/centres/epi-genomic-newborn-screening-program Contact email: david.godler@mcri.edu.au Project lead: Associate Professor David Godler / Murdoch Children’s Research Institute Learn more Federal funding for genomics projects aiming to improve child health GenV Breast Milk Collection GenV Breast Milk Collection The GenV Breast Milk Collection will be one of the largest collections of breast milk in the world supporting research into maternal and child health and nutrition. This includes research to help us understand why some women have low milk supply and how we can help, as well as how breast milk can help improve babies’ health. About The Collaboration GenV is inviting eligible families to be a part of this collection when they join GenV in hospital. By providing a sample of your breast milk you are directly supporting research into child and maternal health. For GenV Parents Who can join? You may be part of the GenV Breast Milk Collection if: You are breastfeeding or expressing You have joined GenV in hospital You can send us a sample via a GenV-supplied home-collection kit What should you expect? When you join GenV you may be asked to collect a small sample of breast milk when your baby is at least 7 days old via a home-collection kit and post it back to us in a prepaid postage bag. contact GenV Breast Milk Collection Project website: https://www.genv.org.au/for-parents/ Contact email: yeukai.mangwiro@mcri.edu.au Project lead: Professor Richard Saffery / Murdoch Children’s Research Institute Learn more What is the breast milk sample and how is it used? GenV Hospital Prescription Project GenV Hospital Prescription ProjectMany women need to take medications during pregnancy or soon after their baby is born. The Hospital Prescription Project is part of GenV. It will help us understand if taking these medications has risks or benefits for women and their babies. About The Collaboration GenV and the Hospital Prescription Project are working closely with all Victorian birthing hospitals to build a database of medicines given to pregnant women. This will help improve the care for women and babies. For GenV Parents Who can take part? You may already be part of the Hospital Prescription Project if: You are in GenV You were given medication by a doctor during your pregnancy or soon after your baby was born What should you expect? You don’t need to do anything. By being a GenV family you can help us find the best ways to care for pregnant women in the future. contact GenV Hospital Prescription Project Contact email: jessika.hu@mcri.edu.au Project lead: Dr Yanhong Jessika Hu / Murdoch Children’s Research Institute Maternal metabolic health And Mother and Baby health Outcomes (MAMBO) Maternal metabolic health And Mother and Baby health Outcomes (MAMBO)Some mothers have health conditions during their pregnancy, like diabetes or high blood pressure. The MAMBO study wants to know whether babies born to these women are more likely to also get these conditions, and how to best prevent and treat them. About the collaboration GenV and MAMBO are asking some families to be a part of both studies and to share information between the projects. Working together will help find out more about who is at risk of obesity, diabetes and high blood pressure, and how to treat these conditions. For GenV parents Who can join? You may be able to join MAMBO if: You are around 20 weeks pregnant (+/- 4 weeks) You are having your pregnancy care at the Royal Women’s Hospital or Frances Perry House What should you expect? If your pregnancy care is at the Royal Women’s Hospital or Frances Perry House, you may be asked to join the MAMBO study while you are still pregnant. The MAMBO Study will ask if you are happy for GenV to know you are part of their study. If you later join GenV you can permit our two projects to share information about you and your child. Contact mambo Contact email: alice.lewin@thewomens.org.au Project lead: Dr Sarah Price / The Royal Women’s Hospital Maternal Vaccine Study Maternal Vaccine StudySome women would like more information about having vaccinations during pregnancy. The Maternal Vaccine Study will look at the healthy development of babies whose mothers did or did not have COVID-19 and flu vaccines in pregnancy, to help understand more about these vaccines. About the collaboration GenV and the Maternal Vaccine Study are working together to improve parents’ confidence in vaccines during pregnancy and help them make important decisions. For GenV parents Who can take part? You may already be part of the Maternal Vaccine study if: You have joined GenV with your baby What should you expect? You don’t need to do anything. By being a GenV family you can help the Maternal Vaccine Study learn more about COVID-19 and flu vaccines in pregnancy. Contact The Maternal Vaccine Study Contact email: ashleigh.rak@mcri.edu.au Project lead: Professor Margie Danchin / Murdoch Children’s Research Institute Learn more COVID-19 and influenza maternal vaccine study receives funding Medication Use in Pregnancy and Lactation Study (MedPaLS) Medication Use in Pregnancy and Lactation Study (MedPaLS)MedPaLS is looking at how medicines are used during pregnancy and breastfeeding to understand if taking medications has risks or benefits for women and their babies. MedPaLS will first study asthma and how asthma is treated during pregnancy. About the collaboration GenV is working closely with MedPaLS to build a database of medicines given to pregnant women. This will help improve the care for pregnant women and babies. For GenV parents Who can take part? You may already be part of MedPaLS if: You are in GenV You were given medication by a doctor during your pregnancy or soon after your baby was born What should you expect? You don’t need to do anything. By being a GenV family you can help us understand the best way to manage asthma and other conditions during pregnancy in the future. Contact Contact email: luke.grzeskowiak@flinders.edu.au Project lead: A/Prof Luke Grzeskowiak / Flinders University & South Australian Health and Medical Research Institute Optimising Immunisation Using Fixed Schedules Study (OPTIMUM) Optimising Immunisation Using Fixed Schedules Study (OPTIMUM)Food allergy is more common than it was 20 years ago. Having a different whooping cough vaccine at age 2 months may protect against food allergy. The OPTIMUM study is testing this. About the collaboration The OPTIMUM study and GenV are asking some families to be part of both projects. This raises awareness of OPTIMUM. It also helps to better understand food allergies in children. For GenV parents Who can join? You may be able to join OPTIMUM if: Your baby hasn’t had their first vaccinations You can travel to The Royal Children’s Hospital What should you expect? If GenV thinks you may be eligible, it may send you a text message about the OPTIMUM study. You can choose to contact OPTIMUM to learn more. If you join OPTIMUM, you can permit our two projects to share information about you and your child. Contact OPTIMUM Project website: https://www.mcri.edu.au/research/projects/optimum-study Contact email: optimum@mcri.edu.au Project lead (VIC): Associate Professor Kirsten Perrett / Murdoch Children’s Research Institute Learn more Babies sought for whooping cough vaccine clinical trial to help prevent allergies Screen cCMV Project Screen cCMV ProjectSome babies are born with a virus called CMV (cytomegalovirus) which can lead to problems with their hearing as they grow. Screen cCMV is testing new technology to improve early screening for this disease to help babies get the treatment they may need. About the collaboration GenV gives families an opportunity to be part of this study when they join GenV. By providing a saliva sample and your consent for testing it, you are directly supporting research that in time may help prevent hearing loss in children. For GenV parents Who can join? You may already be part of Screen cCMV if: You have provided a saliva sample for your baby You have given GenV your permission for your sample(s) to be used for genetic testing What should you expect? You don’t need to do anything. When you join GenV, we already invite you to collect a small sample of saliva from your baby. This can happen either in hospital or via a home-collection kit that you can post back to us. Contact screen cCMV Project website: https://www.mcri.edu.au/research/projects/screen-ccmv-project Contact email: cmv.research@mcri.edu.au Project lead: A/Professor Valerie Sung / Murdoch Children’s Research Institute Learn more Shaping a new approach to treating cCMV Special Care Nursery Project (SCN) Special Care Nursery Project (SCN)The SCN project is part of GenV. We are looking at the care given to babies in SCNs and Neonatal Intensive Care Units (NICUs) in Victoria. The SCN project will help us find the best ways to care for babies who need extra support when they are born. This could benefit babies all around the world in the future. About the collaboration GenV is working closely with all Victorian hospitals to bring together information about the care given to babies in SCNs and NICUs. We want to understand how these small and sick babies spend their first days and what impact this has on them later in life. We will create a new SCN registry for Victoria – and hope this will continue, even once GenV recruitment ends. For GenV parents Who can take part? You may already be part of the SCN registry if: you have joined GenV your baby has spent time in a Victorian SCN or NICU What should you expect? You don’t need to do anything. If your baby spent time in an SCN or NICU, information that already exists about your baby can help us understand the best ways to care for other babies like yours in the future. Contact The SCN Project Project website: https://www.genv.org.au/ Contact email: solutionsgenv@mcri.edu.au Project lead: Dr Jing Wang / Murdoch Children’s Research Institute Learn more GenV Special Care Nursery registry scoping report Twins Research Australia (TRA) Twins Research Australia (TRA) TRA has been running for over 40 years. It’s a registry that supports twin and family studies across Australia. TRA has made many discoveries – these span asthma, allergies, epilepsy, breast cancer and more. About the collaboration GenV and TRA are inviting families with twin or multiple births to join both projects. Joining a twin registry to a population study like GenV is unique. Together, TRA and GenV will help understand how genes and environment shape health and development for all children. For GenV parents Who can join? You may be able to join TRA if: Your twins, triplets (or more) are in GenV What should you expect? If you have twins or multiples, GenV may ask if we can refer you to TRA. If you agree, TRA will contact you directly. If you join TRA, you can permit our two projects to share information about you and your child. Contact TRA Project website: https://www.twins.org.au Contact email: info@twins.org.au Project lead: Professor John Hopper / The University of Melbourne Victorian Childhood Hearing Longitudinal Databank (VicChild) Victorian Childhood Hearing Longitudinal Databank (VicChild)Some children are born with permanent hearing loss in one or both ears that can impact their speech and learning as they grow. VicChild is a Victoria-wide registry that aims to help children with hearing loss reach their full potential. About the collaboration GenV & VicChild are inviting families of children born with permanent hearing loss to be in both studies. Our goal is to find better ways to identify and treat hearing loss, which could improve the lives of these children and their families. For GenV parents Who can join? You may be able to join VicChild if: Your child was born with permanent hearing loss in one or both ears What should you expect? If you are the parent of a child diagnosed with permanent hearing loss you may be asked to join VicChild soon after your child is diagnosed. If you join VicChild you can permit our two projects to share information about you and your child. contact Vicchild Project website: https://www.mcri.edu.au/research/projects/vicchild Contact email: vicchild@mcri.edu.au Project Lead: A/Professor Valerie Sung / Murdoch Children’s Research Institute Victorian Hip Dysplasia Registry (VicHip) Victorian Hip Dysplasia Registry (VicHip)Hip dysplasia, or DDH (developmental dysplasia of the hip), happens when the hip ball-and-socket joint does not develop normally. About 1% of babies have hip dysplasia, but it is easy to miss. Without early treatment, it can cause disability and pain later in life. VicHip is a Victoria-wide registry that aims to change this. About the collaboration GenV and VicHip are inviting families of children with hip dysplasia to be in both studies. Our goal is to find better ways to detect and treat hip dysplasia, which could help people live healthier and more active lives. For GenV parents Who can join? You may be able to join VicHip if: your child has been diagnosed with hip dysplasia in Victoria What should you expect? If you tell us that your baby or child has a hip problem in one of our GenV & Me surveys, GenV may ask to refer you to VicHip. If you agree, VicHip will contact you directly. If you decide to be part of VicHip, you can also permit VicHip and GenV to share information about you and your child. Contact VICHiP Project website: https://www.vichip.org.au/ Contact email: vichip@mcri.edu.au Project lead: Associate Professor Leo Donnan / The Royal Children’s Hospital Learn more New initiative to improve outcomes for children with hip dysplasia Victorian Infant Collaborative Study (VICS) Victorian Infant Collaborative Study (VICS)For more than 40 years, the Victorian Infant Collaborative Study (VICS) has been working to find ways to improve the lives of babies who are born very early. VICS wants to learn more from GenV families who had premature babies, including how they were affected by the COVID-19 pandemic. This information will be used to help parents make important decisions and to improve care for premature babies in the future. About the collaboration GenV and VICS are asking some families to be a part of both studies and to share information between the projects. Working together will help us learn more about caring for babies who are born extremely early or extremely small. For GenV parents Who can join? You may be able to join VICS if: Your baby was born before 28 weeks of pregnancy; or Your baby was born weighing under 1000g VICS is also asking a group of full term babies to be part of their study. What should you expect? If you are the parent of an extremely premature baby, you may be asked to join VICS while your baby is still in the hospital. The VICS Study will ask if you are happy for GenV to know you are part of their study. If you join VICS you can permit our two projects to share information about you and your child. Contact VICS Project website: https://www.vicsinfant-study.org.au/ Contact email: vics.infantstudy@thewomens.org.au Project lead: Professor Jeanie Cheong / Murdoch Children’s Research Institute Victorian Skill Loss Registry Victorian Skill Loss RegistrySome young children stop gaining new skills. They can even lose skills they once had – like language and walking. With funding from the Medical Research Future Fund (MRFF), GenV and Monash Children’s Hospital/Monash University are setting up a Victoria-wide skill loss registry. We aren’t aware of any other registry like this anywhere in the world. About the collaboration Monash and GenV are asking some families to be part of both projects. Children could enter the Skill Loss Registry earlier than otherwise. This could show why some children lose skills, and what we can do to help. For GenV parents Who can join? You may be able to join the Skill Loss Registry if: You tell us in your GenV & Me survey that your child has lost skills they once had What should you expect? If GenV thinks you may be eligible, we may ask to refer you to the Skill Loss Registry. If you agree, the Skill Loss Registry will contact you directly. If you join the registry, you can permit our two projects to share information about you and your child. Contact Skill Loss Project website: Coming soon Contact email: dev.skillsloss@monash.edu Project lead: Professor Katrina Williams / Monash University Learn more Skill loss registry – first of its kind in Victoria