Published: 24 July 2023
The NIHR BioResource is launching a new national childhood DNA health resource.
The DNA, Children and Young People’s Health Resource (D-CYPHR) is the biggest health initiative of its kind in the UK, and a world first. It will enable researchers to explore the genetics of a range of diseases that begin, or have their origins, in childhood. This includes certain mental health conditions, heart disease and type 2 diabetes.
D-CYPHR is led by the NIHR BioResource in partnership with the NHS, Anna Freud and the University of Cambridge.
How D-CYPHR works
The programme is open to any child and young person aged 0 to 15 in the UK. Each young person, with consent from their parent or guardian, donates a saliva sample and answers a health and lifestyle questionnaire. Identifying information is removed from the questionnaire and sample. They then join the resource.
By studying thousands of DNA samples together with health information, scientists can begin to see the big picture of how our genes and environment influence our health.
Researchers want to explore the genetics of a range of diseases to understand more about:
- Developing new treatments for people and making these more individualised
- What causes illnesses, and how to develop better treatment and care
- How to identify illnesses early, avoid unnecessary medical tests and help people access treatment and support sooner
The D-CYPHR programme will support research into any health conditions that begin or have their origins in childhood, not just a specific condition or age group. This will include mental health conditions, diabetes, heart conditions, rare diseases, immune conditions and many more. It will also help researchers understand childhood development and what sets the foundations for a healthy life.
Be a ‘hero for healthcare’
Supporting the programme’s launch, BBC presenter Dr Xand van Tulleken urged families to get involved: “There is no area of medicine more exciting or with more potential to transform our lives for the better than genetics. In the last few decades we have mapped the human genome and made other huge advances: we’ve studied the genome of the fruit fly from end to end, we can explore the DNA of mammoths, and we know the genetic plights of the potato! And now we urgently need research projects that support children’s health and we need children to volunteer to help!
“Children are amazing – I’m constantly astounded by their bravery in stepping up for causes they believe in. Today, we’re offering the chance to be a hero for healthcare – just by spitting in a tube. D-CYPHR will help future children, and it will help all of us in our adult lives. The ambition and scope of the D-CYPHR project is awe inspiring and it relies on these incredible volunteers to make amazing discoveries from which all of us, children and adults, will benefit.”
Why D-CYPHR is important
Many serious health conditions start in the first two decades of life. More than 1.7 million children in England alone suffer from long-term health conditions. However, most health research is carried out with adults. This means we are missing important opportunities to understand how diseases start and develop. It also limits our ability to develop new treatments.
Research has shown the power that understanding genetics can have on outcomes for a range of conditions and illness. This includes improvements to how diabetes is treated in children; and the national roll-out of whole genome sequencing for babies and children in intensive care, after it was found that children in intensive care frequently have a rare underlying genetic condition. Understanding genetics is vital in helping to understand and treat illness.
D-CYPHR aims to support this, while also mapping development in children and young people. The environment and experiences we have while growing up work together with genetics to affect our development, and the likelihood of getting diseases. The more we can understand about this through scientific research, the more treatments can be developed, and tailored to individuals. It even opens up the opportunity to spot problems earlier. In the future, we hope to be able to avoid some illnesses, like heart disease and type 2 diabetes.
Professor Lucy Chappell, Chief Executive of the NIHR, said: ”We’ve seen that genetics can help us unlock our understanding of diseases. Now we want to build on that knowledge by ensuring that our children and young people can access the power of genetics to transform diagnosis and treatment through this research. This exciting new project will help us develop an understanding of their genetics in a way that is more detailed and focused than ever before.
“Children and young people have shaped this work throughout, and by encouraging interest and involvement in the research process, we hope to inspire the next generation as participants and scientists.”
Secretary of State for Health and Social Care Steve Barclay said: “This pioneering genetic research programme is an exciting opportunity to advance our understanding of the causes of diseases and how they develop from childhood through to adulthood.
“By focusing on the DNA of children and young people we’ll be able to track how genetics affects a child’s development and build a picture of what might impact on their future health. As a result we’ll be able to develop more effective, bespoke treatments and even explore potential preventative measures for a wide range of conditions, including mental health issues and heart disease.
“More research into health conditions is vital to understand how we can better diagnose and treat ill health at any age and we’re already investing £1 billion per year in health research through the National Institute for Health and Care Research.”
Dr Anna Moore, University of Cambridge, clinical lead for D-CYPHR, said: “We’ve got a huge gap in our understanding of how diseases develop as children grow up, for both physical and mental health. We’ve carefully designed and piloted the programme alongside children, schools and families over two years. This has been very important as this project will also be a way to address inequality in health research – health research needs to benefit everyone, and so we need children and young people from all backgrounds to get involved. Each sample joins a resource with thousands of others showing how environment and genetics affect health. The potential of D-CYPHR is therefore massive. We’re excited to unlock these secrets together with the young heroes that are agreeing to help us.”
A D-CYPHR participant
Suzie, a mother of a D-CYPHR participant from Salisbury, said: “I saw my daughter, Sophie's, journey from a very unwell newborn to a vibrant and active 7-year-old, enjoying life to the fullest. She’s now thriving and loves reading, baking, riding, and drama, which brings immense joy to her and our family. But in her early days, she faced significant health challenges.
“The cause of these episodes were unknown, leaving us puzzled and seeking medical answers – but understanding the problem had a genetic cause meant her medical team could put in place the right treatments and support for her. It made me realise the importance of expanding our knowledge of children's diseases and hopefully in the future this research will lead to new treatments that will help children with Sophie’s difficulties.
“D-CYPHR is an opportunity for us to support research that might give answers to other parents in our situation, as well as creating better treatments for millions of people.”
For more information about how to sign up please visit:
https://bioresource.nihr.ac.uk/dcyphr/