The East GMSA will be collaborating with Genomics England in delivering the ‘Generation Study’, formerly known as the Newborn Genomes Programme.
This project will evaluate the potential of identifying actionable childhood-onset rare genetic conditions following birth, by sequencing and analysing 100,000 babies’ genomes.
This could contribute to improved outcomes and quality of life for babies and families.
Aims of the Generation Study
The Generation Study has three main aims:
- To evaluate the utility and feasibility of screening newborns for several childhood onset rare genetic conditions using genomic technologies.
- To understand how genomic data could improve knowledge and treatments.
- To explore potential risks and benefits of storing an individual’s genome over their lifetime.
See also Genomics England's Generation Study Vision document.
Who are we working with?
This is a national study being led by Genomics England. You can find out more about the Generation Study on their website:
A full list of NHS Trust pilot sites will be released shortly, and updated here.
Progress so far
We recently held a dedicated education and training session as part of our Genomics BITEs series. The session was delivered by Sally Shillaker, Clinical Content Developer at Genomics England. You can watch the recording below.
Recording of an NHS East Genomics session on the Generation Study, delivered by Sally Shillaker from Genomics England in July 2023
Link: https://www.youtube.com/watch?v=taXx4q9urqs&list=PLQfvULnuzrf0Q191TcfKKyyH8ns1_0wjw&index=5
Meet the East GMSA team
- Jo Hargrave, East GMSA Lead Midwife, Joanne.Hargrave@nnuh.nhs.uk
- Pauline Simpson, East GMSA Project Manager, Pauline.simpson@nnuh.nhs.uk