NEPTUNE

• Research type

  Research Study

• Full title

  NEPTUNE: Non-InvasivE Prenatal Testing Wales: UNdErstanding and Improving the New Landscape of Prenatal Screening

• IRAS ID

  273494

• Contact name

  Heather Strange

• Contact email

  strangehr1@cardiff.ac.uk

• Sponsor organisation

  Cardiff University

• Duration of Study in the UK

  1 years, 1 months, 28 days

• Research summary

  In 2018 a new test called Non-Invasive-Prenatal Testing (NIPT) became part of normal NHS care offered to women and other pregnant people in Wales.
  
  NIPT is a blood test. Like other tests offered during pregnancy, NIPT is used to tell whether people have a high chance of having a baby with one of three different genetic conditions: Down’s syndrome, Edwards’ syndrome and Patau’s syndrome. NIPT is different because it is very accurate, there is no risk the pregnant person or baby will be harmed, and it can be used from early stages of pregnancy.

  NIPT can be purchased from private clinics for about £400. Anyone can use private NIPT (in the NHS people must have another test first).

  NIPT is a very good test but it is not perfect. When results say the baby has a condition, the test could be wrong. If people want to know for sure, they must have an ‘invasive’ test. This will tell for certain if the baby has the condition, but there is a small chance the pregnancy will be lost because of that test.

  Because NIPT is new, we don’t have much information on what women and other pregnant people in Wales, their midwives, and other people involved (like their partners, or hospital doctors) think about the test. We don’t know what it is has been like for them to use NIPT in the NHS for the first time and we don’t know how to help staff offer NIPT in a way that suits everyone best.

  NEPTUNE will build a detailed picture of how NIPT is being used in Wales. Researchers will talk to service users and staff to understand what matters most to them, create guidance on how NIPT can be best used, and develop a tool to help support best practice.

• REC name

  Wales REC 1

• REC reference

  22/WA/0207

• Date of REC Opinion

  4 Aug 2022

• REC opinion

  Favourable Opinion