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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. You can read more about the types of information here.

This part of GenV happens in the background so we don’t need to ask you again each time. This means GenV takes little effort from you and helps us build a more complete picture of health and wellbeing.

Over time, we will access data from many sources. These include records and services about:

  • Physical and Mental Health
  • Education
  • Social
  • Neighbourhoods

Click here to learn more about these and why they are important.

We also access and store leftover clinical samples from you and your child. You can learn more about these here.

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: Selected CVDL datasets (TBC)
  • Access Period: Commencing 2024
  • 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:¹ All GenV children recruited from 07/12/2020 to current.
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.