Available data & biosamples


Information about available data and biosamples is organised into four categories. Scroll down to view each section:

GenV held and linked data
  • GenV and Me
  • Geographic and environmental data
  • Biosamples, genomics and molecular data.

GenV held and linked data

What GenV held data are available, and how often are they refreshed?

Available data can be viewed here. Data will be refreshed once a year.

What linked datasets are available, and when are they refreshed? 

Available data can be viewed here. GenV perform annual refreshes to linked datasets. Additional linkages and associated costs can be discussed as part of a research proposal.

What additional data collection, linkage and release are planned? 

GenV is continually expanding the list of linked datasets and is looking to incorporate Commonwealth Medicare datasets, Maternal Child Health and education datasets in the future.

GenV and Me

What is GenV and Me?

GenV and Me is the website and app that participating parents and guardians use to complete short surveys and activities over time.
GenV was designed to collect much of its information through linked records and major data collection waves, with limited demands on families between these points. GenV and Me provides additional, more frequent information from families who choose to take part. These participants form an important longitudinal subset within the wider GenV cohort.
GenV and Me surveys from child age 3 months to 2 years are available for Cohort 2020s families. Future data releases will also include later surveys for the Advance Cohort and Cohort 2020s.
GenV and Me is available in English, Arabic, Burmese, Dari, Punjabi, Simplified Chinese and Vietnamese.

What information is collected through GenV and Me?

Parents and guardians answer questions about their own and their child’s health, development and wellbeing. Topics include quality of life, health conditions, sleep, feeding, nutrition and family circumstances. Some activities may also involve photographs, video or audio.
You can explore GenV and Me survey data by navigating to the Data Dictionary.
If you would like further information about the constructs and measures used, please Contact Us

When are GenV and Me surveys completed?

Surveys begin shortly after birth or recruitment. They are generally offered every three months during the child’s first year and every six months until the child turns five.

Which survey waves are available?

New survey data are generally added through GenV’s annual data releases. Each wave requires time for families to respond and for the data to be cleaned, coded and quality checked, so it may not be released until the year after collection ends.
You can explore currently available GenV and Me survey data by navigating to the Data Dictionary.

What are the GenV and Me survey response rates?

Around 22-33% of mothers and 14-20% of other parents responded to each GenV and Me survey wave, although participation varies by wave.
GenV and Me respondents are a self-selected subset of the broader GenV cohort and are not fully representative of all GenV families. Researchers using these data should consider selection bias, missingness and whether adjustment or sensitivity analyses are needed.
Not completing GenV and Me surveys does not mean that a family has withdrawn from GenV. Most families remain part of the broader cohort and may continue to contribute through linked data and future data collection activities.
Repeated responses provide valuable longitudinal information that is not available elsewhere in GenV.
For response rates and information about respondent characteristics, please navigate to the GenV Cohort Explorer or Contact Us

Geographic and environmental data

What geographic and environmental data can I access?

The current release includes:
  • annual average nitrogen dioxide exposure at postcode level (NO2)
  • vegetation greenness within 100 metres of the participant’s home (NDVI).

If you would like further information about geographic and environmental data, please Contact Us

What additional geographic & environmental data are planned?

GenV plans to add further environmental exposures, settings, time periods and exposure measures as these become available.
If you would like further information about geographic and environmental data, please Contact Us

Can I link my own geographic or environmental data to GenV?

Yes, this may be possible. GenV can work with researchers to develop new environmental indicators or incorporate researcher-provided indicators.
This work must be completed within GenV’s secure environments and privacy-preserving processes. Costs may apply.
If you would like to discuss your proposal, please Contact Us

Biosamples, genomics and molecular data

What biosamples are available?

GenV holds several types of biosamples collected from participating children and parents. Availability depends on the participant group, collection period and proposed use.
For further information, please refer to the User Guide – Data and Biosamples Access and GenV available and upcoming data and biosamples.

Are there limits on how biosamples can be used?

Yes. Biosamples are finite and may be used up during testing, so requests are assessed for scientific value, feasibility and the best overall use of the collection.
For further information, please refer to the User Guide – Data and Biosamples Access.

What assays or molecular analyses have been undertaken on GenV biosamples?

Work to date has mainly involved quality testing to confirm that samples are suitable for future research. This has included DNA yield and concentration testing for saliva, and measurement of fat, protein, lactose and lysozyme in breast milk.
DNA has not yet been extracted at scale, and no large-scale genomic, microbiome or other omics assays have been completed across the collection.

Can I request new assays or molecular analyses?

Yes, this may be possible.
Consistent with GenV’s commitment to inclusive, population-wide research, priority will be given to high-value assays conducted across the full relevant GenV collection and capable of creating a resource for broad future use. Because GenV biosamples are limited and may be depleted through testing, assays involving only a subset of participants are unlikely to be approved unless there are exceptional reasons.
If you would like to discuss your proposal, please Contact Us

Can I propose the collection of new biosamples?

Yes, this may be possible.
GenV can consider new biosample types or additional collections that would add important value to the existing biobank.
Priority will generally be given to high-value collections involving the full relevant GenV cohort. New collections may require additional participant consent and must be feasible and compatible with GenV’s infrastructure, other planned studies and the participant experience.
If you would like to discuss your proposal, please Contact Us