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What data does GenV access?

Once you join GenV, we access data and samples collected by other services for you and your child¹. Over time, this will cover physical and mental health, education, social and neighbourhood information. Sometimes services update your personal information or give identifier numbers so we can match families accurately.

This part of GenV happens in the background. This means GenV takes little effort from you and helps us build a more complete picture of health and wellbeing.

Want to know more?

  • Scroll down to see the data and samples GenV has already accessed.
  • Click the links to learn more about these data and samples, and why they are important.

Questions or concerns? Check our frequently asked questions (FAQs).


Data and Sample Sources

The table below shows what data and samples GenV has accessed so you always know. Click on each data or sample source to learn more. Newest sources are shown at the top. 

Victorian Infant Hearing Screening Program (VIHSP)

Victorian Infant Hearing Screening Program (VIHSP)

  • Data Owner: The Royal Children’s Hospital
  • Data Type: Hearing screening and outcome data
  • Access Period: Commencing 2024
  • GenV Cohort:¹ GenV children born from 05/12/2020 onwards.
Centre for Victorian Data Linkage (CVDL)

Centre for Victorian Data Linkage (CVDL)

  • Data Owner: The Victorian Department of Health
  • Data Type: 
    • Victorian Perinatal Data Collection (VPDC)
    • Victorian Death Index (VDI)
    • Victorian Death Index –  Death Registry Coded (COD URF)
    • Victorian Admitted Episodes Collection (VAED)
    • Victorian Emergency Minimum Dataset (VEMD)
    • Victorian Alcohol and Drug Collection (VADC)
    • Mental Health Community Support Services (MHCSS)
    • Child Protection Services Dataset (CP)
    • Public Health Event Surveillance System (PHESS)
    • Community Health Services (CHMDS)
    • Client Management Interface/Operational Data Store (CMIODS)
    • Transmission Response Epidemiology Victoria Information System (TREVI)
    • Family Services (IRIS FS)
    • Family Violence (IRIS FV)
    • Family Services – Cradle 2 Kinder (IRIS C2K)
    • Public Housing (HIIP) / Housing Datamart (HD)
    • Victorian Cancer Registry (VCR)
    • Medicare Benefits Schedule (MBS)
    • Pharmaceutical Benefits Scheme (PBS)
    • Australian Immunisation Register (AIR)
    • Births (part of the Births, Deaths and Marriages (BDM))
  • Access Period: 2024 – ongoing
  • GenV Cohort:¹ GenV children born from 05/12/2020 to onwards and their participating parents.
Melbourne Children’s Bioresource Centre (MCBC)

Melbourne Children’s Bioresource Centre (MCBC)

Data Owner: Victorian Clinical Genetics Services (VCGS)

  • Data Type: Newborn Bloodspot Samples (NBS)
  • Access Period: June 2023 – ongoing
  • GenV Cohort:¹GenV children born from 05/12/2020 onwards.

 

  • Data Type: Maternal Serum Screening (MSS) and Non-Invasive Prenatal Testing (NIPT)
  • Access Period: December 2023 – ongoing
  • GenV Cohort:¹Participating birth mothers of children born from 05/12/2020 onwards.

 

Joan Kirner Women’s and Children’s (JKWC) at Sunshine Hospital

Joan Kirner Women’s and Children’s (JKWC) at Sunshine Hospital

  • Data Owner: Western Health
  • Data Type: Clinical data variables from hospital administrative datasets, Birthing Outcomes System, electronic and other medical records and tests.
  • Access Period: March 2022 – ongoing
  • GenV Cohort:¹ GenV birth mothers and child born at JKWC from 05/12/2020 to 12/2021.
Victorian Registry of Births, Deaths and Marriages

Victorian Registry of Births, Deaths and Marriages

 

  • Data Owner: The Department of Justice and Community Safety, Victoria
  • Data Type: Birth and death information
  • Access Period: May 2021 – August 2021 
  • GenV Cohort:¹ GenV parents and child born at JKWC from 05/12/2020 to 08/2021.

¹Some consent wording differed a little for parents with children born up to July 2021This was during our Vanguard and scaling-up phases. This may alter how we access data and samples for some participants.