Generation Study passes major milestones at UHDB to support genetic healthcare improvements for future generations
University Hospitals of Derby and Burton (UHDB) is continuing to make a telling contribution to research looking at newborn babies' genomes to help improve the testing, diagnosis and treatment of genetic conditions - with more than 1,600 parents and babies now involved in the Generation Study across Royal Derby Hospital and Queen's Hospital Burton.
Last month saw the 1,000th person at Royal Derby Hospital (RDH) sign up to take part in the Generation Study, while more than 500 participants have agreed to get involved at Queen's Hospital Burton (QHB). The study first opened to recruitment across both hospitals in January 2025 >.
The nationwide long-term research study investigates the genomes of newborn babies to see if their DNA can help us find and treat genetic conditions earlier. Those taking part could find out early about a possible genetic condition in their baby, as well as giving future generations of children a healthier start to life.
Speaking about the number of families who are getting involved, Estelle Baldwin, Research Midwife, said: "We are thrilled to reach the 1,000 recruit milestone for the Generation Study at Royal Derby Hospital, and I know the team at Burton are just as pleased to have recruited so many participants. That is more than 1,500 babies that we could potentially make a life-changing difference to if any rare genetic condition was to be discovered through screening.
"All families with suspected conditions would be supported through the process of getting early diagnostic testing and treatments. The sooner these conditions are diagnosed and treated, the much better the outcomes are in the long term, and we know the positive impact this study can have for our communities in the future."
One focus area of the campaign is to raise awareness of this research across our local population and to ensure it is truly representative of the communities we serve - with Laura Johnson, UHDB Lead Research Midwife and Principal Investigator, and Sam Hussain, Research and Inclusion Lead, collaborating closely from the start of the project to raise awareness of the Generation Study across the community and encourage those expecting babies to take part.
Study sponsors Genomics England > have developed multiple resources to support diverse recruitment, including patient information sheets in more than 17 different languages, and a simple YouTube video that explains the purpose of the study and the process of getting involved. Our teams across RDH and QHB have worked exceptionally hard to utilise these resources and engage women and birthing people across the population.
Referenced in the NHS 10-Year Plan, the Generation Study is looking to enhance personalised prevention and early interventional care for babies, by identifying potential risks early in life and aiding the development of personalised preventative care - while also playing into a long-term ambition to offer genomic sequencing to all newborns, creating building blocks for future preventative medicine and establishing the UK as a leader in genomics.
Reflecting on the impact the study is having, Estelle added: " One example of this is baby Freddie from Sheffield >, who was diagnosed with a rare and aggressive form of eye cancer, usually diagnosed in very young children, just four weeks after being born. Early detection is crucial for preserving vision - but when there is no known family history, diagnosis often comes later, once symptoms have progressed. The chances of protecting Freddie's eyesight have been greatly improved by finding out about this earlier, thanks to the family participating in the Generation Study."
How it works?
If you'd like to be part of this research you can talk to your midwife, a member of our research team at an event or by emailing uhdb.thegenerationstudyrdh@nhs.net . If you consent to being involved, one of our team will process your consent.
A blood sample will be collected shortly after the birth of your baby from the umbilical cord. This will not cause pain.
You will be contacted within a few months with the results - if the team find something, you will be contacted straight away.
Your data is safely stored and used for research by Genomics England. The data stored will include your baby's samples and health data, digital file of their DNA and your antenatal information.
You will be kept up to date about the study over the next 16 years as researchers study this data to learn more about genes and health.
UHDB will be recruiting for this trial over the next few years.
Who can take part?
Pregnant women and birthing people can sign up by speaking to your midwife or by emailing our research team at uhdb.thegenerationstudyrdh@nhs.net and the test happens shortly after the birth of your baby, which involves taking a sample from the umbilical cord.
People from deprived and underserved communities are welcome to sign up - we know that current research doesn't represent all our community groups which means today's healthcare is not always inclusive of these groups - we want to change this by increasing the number of people from underrepresented groups in this study so that the future of genetics health benefits all our communities.
Are you from a Black, Asian or ethnic minority background or part of the LGBT+ community? Maybe you are someone who doesn't have a fixed address or part of the travelling community? We want to hear from people from all backgrounds and walks of life to take part in this life-changing research.
Sign up
You can sign up or enquire by emailing uhdb.thegenerationstudyrdh@nhs.net . You can also express your interest at your next maternity appointment with your midwife.
Additional resources
Visit the Genomics England website to find out more about the study >.
You can find more information in other languages by scanning the QR code below.