Cambridge researchers have launched the world’s first national childhood DNA research programme, to help transform healthcare for children and young people.
Cambridgeshire and Peterborough NHS Foundation Trust and Cambridge University Hospitals are working with the University of Cambridge and Anna Freud on the National Institute for Health and Care Research (NIHR) BioResource D-CYPHR project to build the DNA, Children and Young People’s Health Resource and unlock the power of genetic code.
This BioResource will be instrumental in pioneering new treatments and developing better services for children and young people, including patients at Cambridge Children's Hospital, the first specialist children’s hospital in our region bringing physical and mental healthcare services together, with research, under one roof.
DNA can help solve a range of healthcare problems, from improving understanding of mental health, rare diseases, diabetes, childhood development to combatting heart disease. The Cambridge Children’s Hospital’s Centre for Genomic Medicine will be one of two flagship centres within the hospital’s research institute that will deploy cutting-edge genomics to find new and better diagnostics and treatments.
Many serious health conditions start in the first two decades of life, with over 1.7 million children in England alone suffering from long-term health conditions. However, most health research is carried out with adults, meaning we are not only missing important opportunities to understand how diseases start, develop and what causes them.
Suzie, a mother and D-CYPHR participant, said: “I saw my daughter Sophie's journey from a very unwell newborn with significant health challenges, 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.
"D-CYPHR is an opportunity for us to support research that might give answers to other parents in our situation, as well as create better treatments for millions of people.”
Cambridge research has shown the power that understanding genetics can have on outcomes for a range of conditions and illnesses. From improvements to how diabetes is treated in children, to the national roll-out of whole genome sequencing for babies and children in intensive care – after a research project led by Addenbrooke's Hospital and the University of Cambridge with BioResource support found that children in intensive care often have a rare underlying genetic condition.
D-CYPHR aims to support this, while also mapping development affected by our environment and experiences, among children and young people. The more we can understand about this through scientific research, the more treatments can be developed, and tailored to individuals.
Dr Anna Moore is the clinical lead for D-CYPHR and co-developed the programme with her findings and experience as Assistant Professor of Child Psychiatry at the University of Cambridge, consultant psychiatrist at Cambridgeshire and Peterborough NHS Foundation Trust and researcher with the NIHR Applied Research Collaboration East of England.
Anna (left) said: “Wouldn't it be amazing if we knew as much about how children's genetics affects their health, as we do about the genetics of the fruit fly?
Today we are at the beginning of the most tremendous opportunity which will transform our understanding of genetics for children's health. 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 – and so we need children and young people from all backgrounds to get involved.”
Dr Moore is playing a key role in developing Cambridge Children’s Hospital with her research on harnessing data and improving the early identification of mental health issues.
Supporting the programme’s launch, Dr Xand van Tulleken, BBC presenter, is urging parents and their children to get involved: “There is no area of medicine more exciting or with more potential to transform our lives for the better than genetics. Now we urgently need research projects that support children’s health and we need children to volunteer to help!
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."
A child or young person aged 0-15, with parental consent, donates a saliva sample and answers a health and lifestyle questionnaire.
The information and sample are depersonalised and joins the NIHR BioResource.
By studying thousands of DNA samples together with health information, scientists can begin to see the big picture of how our genes and our 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 children and adults access treatment and support sooner.
Professor Lucy Chappell, Chief Executive of the NIHR commented: "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.
"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."
The new NIHR BioResource D-CYPHR programme is open to any child in the UK aged 0 –15.
For more information about how to sign up please visit the NIHR BioResource website.