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What data and samples will be collected?

When families consent to join GenV, we will mostly bring together data and samples that are already routinely collected on the participating child and parents.

This data includes information from:

  • Government departments
  • Hospitals
  • Doctors, and
  • Other providers relating to a participant’s health, mental health, education, and social records and services.

The process is designed to be as easy as possible for all those engaging with GenV.

Any biosample collection will largely use established procedures and workflows⁠—within pathology providers where possible⁠—to reduce burden.

GenV’s sample collection is unique in that it intends to work with pathology providers to collect any leftover sample prior to discard, rather than needing to collect fresh samples from participants.

What type of biosamples may be collected?

GenV’s target biosamples are broken up into three main tiers:

  1. Pregnancy samples that are routinely collected. These samples include Maternal Serum Screening (MSS) bloods, Non Invasive Prenatal Testing (NIPT) bloods, both collected around 10-12 weeks gestation, and Newborn Blood spot Screening (NBS) collected at birth.
  2. Biosamples collected as part of routine care in pregnancy but discarded after testing. These samples include pregnancy bloods taken at 10-12 weeks, 24-28 weeks, and 36 weeks, as well as a Group B Streptococcus Swab collected around 34-38 weeks.
  3. Samples that are not routinely collected. Saliva is collected during participant recruitment from babies and parents, if participants give consent. We may also have collected placenta, cord blood, neonatal stool and breast milk from breastfeeding or expressing mothers. These samples will require further collaborations to establish procedures for collection and processing.

Find out more about the information GenV collects.