This is a free and optional research study. It is a national study run by Genomics England in partnership with the NHS. Our Clinical Research Group are offering the Generation Study in Oxford. Click here to contact us today.
“Our decision to join the Generation Study has changed Freddie’s life phenomenally. We were told that the first 6 months is vital in diagnosing and treating the condition. There’s no telling at what point it would have been discovered if we hadn’t taken part and what might have happened.” - Freddie’s dad
Steps to join at oxford
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register for the study
Contact the Clinical Research Group if you have any questions, or to register for the study. Click here.
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Sample collected
A qualified practitioner will collect a blood sample shortly after birth. It should not be painful.If you give birth at home, your midwife can collect a blood sample or we'll schedule a hospital appointment to collect the sample shortly after your baby is born. We will label your baby’s sample with a unique code number. Next, the team send the sample to external companies. These companies extract and sequence DNA. nb. They cannot access your baby's personal details.
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Results sent
We'll contact you by phone or email within a few months with results. If no conditions are suspected, we will contact you by letter or email, a few months after birth. Most babies will get this result - about 99 in 100. It means we did not find any of the gene changes known to cause the genetic conditions in this study. This does not mean your baby will never get sick. There are many other health conditions they could get. We’ll send a copy of this result in a letter to your GP. You can always talk to them about the result. You should also talk to them if you are worried about your baby’s health or your family history.
If a condition is suspected A very small number of babies in this study will get this result (about 1 in 100). It means we found one of the gene changes known to cause one of the genetic conditions in our study.
If we suspect your baby has a condition, we will share this with a specialist team in the NHS, so that your baby can get fast and specialised care.
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Data safely stored and used for research
We'll store your baby's samples and health data, a digital file of their DNA, and your antenatal data. Approved researchers can study this data to learn more about genes and health.
See how data is stored -
Ongoing contact
We'll keep you updated about the study for the next 16 years. The study stores your baby’s data for 16 years. We may contact you from time to time throughout your baby’s childhood. Typically no more than a couple times per year. This could be by email or letter. You can change your mind about taking part at any time and you don’t need to tell us why.
Click here if you have any further questions or would like to take part in the study.