Launched by the NIHR BioResource in 2023, D-CYPHR has recently reached the exciting milestone of having more than 10,000 children and young people signed up to improve the health of future generations.
Professor Lucy Chappell, NIHR CEO and Chief Scientific Adviser to the Department of Health and Social Care, said:
“The onset of health conditions can start in childhood but health research often focuses on adults. This can miss the opportunity to intervene earlier and improve health outcomes. The NIHR BioResource D-CYPHR programme helps to address this by supporting health research in children and young people, particularly those from communities often underrepresented in research.
“To see over 10,000 children and young people signed up to D-CYPHR is an incredible achievement - one which could help identify conditions earlier and lead to the discovery of innovative new treatments, such as the early intervention for depression trialling support to young people through gaming. This programme has the potential to improve people’s health and care for generations to come."
Projects get under way
The first research projects involving the young volunteers and their families have already begun, including:
- the SPARX-UK study, which is seeking to understand whether computerised Cognitive Behavioural Therapy can effectively support young people in the UK living with depression
- the Metabolic Reference Measurements in Childhood and Adolescence study, which is investigating energy expenditure in children with rare diseases
- the ATTEND study, to see if mindfulness therapy can help with depression in adolescents and carers
When joining D-CYPHR, participants consent to receive information about studies based on the health and lifestyle data they provide. Participants then decide whether they would like to take part.
Dr Camilla Babbage, Trial Manager for SPARX-UK commented:
“Working with BioResource has given us a significant boost to recruitment for the SPARX-UK trial. In research trials, we face many challenges to recruiting large numbers of young people and we were worried we might not reach our targets.
“Since BioResource have come on board, we’re seeing the numbers we need to be able to understand the impact of different engagement methods alongside digital interventions such as SPARX. We’ve never been closer to our targets! Further, implementing this method of recruitment felt seamless, both to our research team and to the participants who have seemed eager to get involved.”
The BioResource created D-CYPHR because very little health research is currently conducted with children and young people in the UK or elsewhere.
Dr Nathalie Kingston, Director of NIHR BioResource, said:
“It is fantastic to have over 10,000 children and young people signed up in the first two years but it is really only the beginning. We want to get tens of thousands involved so we have a movement that can really help to unlock answers to some of the most pressing health challenges we face as a society.”
How D-CYPHR works
D-CYPHR explores two key things for our health: our genetics and our environment. Together these can explain why we get sick and what might help, providing vital clues for diabetes, mental health conditions, heart disease, rare diseases, immune conditions and many more.
Each child or young person donates a saliva (spit) sample and answers a health and lifestyle questionnaire. By studying thousands of DNA samples together with health information, researchers can begin to see the big picture of how our genetics and our environment influence our health.
Chantal, mum to D-CYPHR volunteer Jenson, said:
"Personally we are so thankful for D-CYPHR as it has been and continues to be difficult knowing Jenson has a life limiting condition that will affect his mobility, respiratory and heart function.
"Research gives us hope for improved care, understanding and potential treatments to prevent the agonising difficulties that rare diseases bring to families. Jenson hopes more children will participate and become DNA Research Superheroes just like him!”
Created as a partnership with the NHS, Anna Freud and the University of Cambridge, D-CYPHR aims to be truly representative of children and young people in the UK. It has teamed up with community organisations including the Black Health Initiative (BHI), Caribbean & African Health Network (CAHN) and South Asian Health Action (SAHA) to reach and inspire children and young people from backgrounds that are currently underrepresented in health research, so all communities can benefit from the research outcomes and insights that come out of the programme.
A spokesperson from Egality Health, a community engagement agency that has been working with D-CYPHR, said:
“It’s been a wonderful opportunity to be part of the D-CYPHR project, working closely with the NIHR BioResource and our trusted community partners. Over the past 12 months, we’ve been connecting with communities that are so often overlooked in research, and it’s been encouraging to see more people from diverse backgrounds choosing to take part.”
All families with children or young people aged 0-15 can join D-CYPHR today.