DNA, Children + Young People’s Health Resource

You’re a hero. It’s in your DNA. 

You can help pioneer new treatments for millions of people by helping us unlock the power hiding in your DNA. Together with the NHS, NIHR BioResource is creating a nationwide movement for ages 0 - 15 to help health research - everything from better understanding mental health to combatting diabetes. And all you need to do is spit in a tube. 

JOIN TODAY - Be a part of our health research movement for ages 0 -15

Your superpower

Find out about our programme! Watch our one minute film.

Join today!

How it works 

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, scientists can begin to see the big picture of how our genetics and our environment influence our health. 

There are five steps to take part:

  1. Express your interest and provide contact details

  2. Sign consent forms

  3. Complete a short health and lifestyle questionnaire

  4. Spit in the tube we send you in the post

  5. Take part in further studies

Download our Participant Information Sheets to find out more - please read these carefully. If you require this information to be translated into another language or in a different format, please contact us.

Information sheet & consent form for parents and guardians

Information sheet for ages 3 to 5

Information sheet & assent form for ages 6 to 8

Information sheet & assent form for ages 9 to 12

Information sheet & assent form for ages 13 to 15

Saliva /spit kit instructions sheet

Who we are 

Our DNA can help to decipher some of the most pressing health challenges we face.  Most diseases start in childhood, but most health research is carried out in adults. D-CYPHR wants to change this by supporting health research for ages 0 – 15, pioneering new treatments and creating better care for children and the adults they will become. 

We explore two key things for our health: our genetics and our environment. Together these can explain why we get sick and what might help. 

Contributions by young heroes today could provide clues for diabetes, mental health conditions, heart disease, rare diseases, immune conditions (and many more). 

We want to make it easier for families to get involved with health and genetics research studies. Families with children and young people aged 0 – 15 can help from home. The project is led by the National Institute for Health and Care Research (NIHR) BioResource in partnership with the NHS, Anna Freud and the University of Cambridge. 

1.7 million children and young people in England have long-term health conditions

But research can help. From improvements to how diabetes is treated in children, findings for cystic fibrosis, to the national roll-out of whole genome sequencing for babies and children in intensive care - new discoveries are being made all the time. You can be part of it!

Working with schools

Our schools programme is delivered in partnership with Anna Freud, a leading mental wellbeing charity focused on support for children, young people and families.

Find out about our work with schools

Ambassadors

We’ve been working with young people, parents and schools for two years to create D-CYPHR. This is a health programme made with and for children and young people. Guardians and young participants can join the ambassadors to shape our work.

Email participation@annafreud.org to ask about being an ambassador.

Any questions?

Please see our frequently asked questions list below.

Or you can email dcyphr@bioresource.nihr.ac.uk to speak with us.

Latest news

FAQs

For complete and detailed information on the programme please download our Participant Information Sheet for Parents and Guardians.

D-CYPHR needs volunteers both with and without health conditions to better understand childhood health. Both groups will provide invaluable insights!  

One of the most important groups in any research study is the one called the ‘control’. This is a group of individuals with no specific disease who act as a comparison group for people with a known illness. By having a ‘control group’, researchers can compare different things in the ‘disease’ and ‘control’ groups to understand what is different.   

Any child or young person in the UK can help by joining online.

We are not open to children or young people outside the UK. 

We need to learn a lot more about childhood health. We also need to understand how genetics and environmental factors affect children as they grow and develop.  

Research into the origins of disease has revealed that most diseases start in childhood, yet most health research is carried out in adults. We are missing clues and opportunities to help children and the adults they will become.   

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  

This could make healthcare better for everyone.  

Genetic research is seen as one of the key opportunities to transform medicine and improve health in the coming years. A lot of progress has been made already. We can now carry out rapid tests for children with diabetes to select which medication will work best for them, avoiding daily injections for many.    

Genetics plays an important role in many childhood diseases. For example, we know that genetics can affect the likelihood of getting infections as a child or developing mental health problems early in life.  

Our bodies are made up of millions of cells. Each cell contains DNA, which provides the cells with instructions on how to work.  

DNA also determines things like your hair and eye colour. Each piece of information is carried on a different section of DNA – these sections are called genes. The study of genes is called genetics. 

Every second of every day your cells are using the instructions from your genes to keep your body working. The genes tell your cells which molecules to make – the central process to start all the proteins, antibodies, hormones and other things your body needs. This is why genes are so important to health research.   

Every human has unique DNA (except for identical twins). Your unique DNA and genes will influence what keeps you healthy. 

When we talk about ‘environment’ we mean the things that make up your day-to-day experiences – it can include things like what part of the country you live in, if its rural or in a city, the food you eat, your family life or school. Research shows that a person’s genetic makeup can affect how they interact with different environments.  

Yes. Although this is a childhood health research programme, the research may span age groups, or relate to conditions like diabetes or Inflammatory Bowel Disease which occur in children and adults. 

It is hoped that the research conducted today will benefit the young people participating in their future adult lives, as well as future children to come.

When you join, we will ask permission to securely access health, education and social care records, to ensure accurate research.   

We will only request specific information from these records when needed and only to permitted staff. Best ethical and legal practice will be followed to ensure your information will be handled in confidence. Access to personal details will only be available to necessary members of the NIHR BioResource and regulatory authorities.  

We are regulated by the NHS Health Research Authority. The NIHR BioResource is compliant with the NHS Data Security & Protection Toolkit, which is used to ensure organisations handling patient data are doing so responsibly. 

Participants are free to withdraw at any time without giving a reason.

There are two types of withdrawal you can choose from (‘no further contact’ or ‘no further use’).

No further contact withdrawal

Please request this if you and your child choose to stop further contact with us but would be happy for us to continue research with their sample. If you choose a ‘no further contact withdrawal’, we will continue collecting of information about your child’s health from central NHS records, their hospital, their GP, and also information from social care and educational records. However, we will stop contacting you to invite your child to take part in further research studies.

No further use withdrawal

Please request this if you would like us to stop looking at your child’s information after the point of your withdrawal. We will destroy your child’s remaining sample and will stop any further contact with you. However, we are unable to remove any information that has already been collected about your child up until the point of your ‘no further use’ withdrawal.

If you and your child agree that they can join, we will: 

  • ask parents/guardians to read and sign a consent form on behalf of their child or young person (online or paper)
  • ask children and young people who are able, to sign an assent form as well (online or paper) 

We have assent forms available for ages:  

  • 6 – 8 
  • 9 – 12 
  • 13 – 15 

Babies and children aged 0 – 5 do not need an assent form. 

If you have a question about child assent please contact us by email: dcyphr@bioresource.nihr.ac.uk  

Some participants will be able to help with further studies. How you are matched will depend on the participant's genetic data, their answers to the questionnaires, and what the researchers are trying to study.  The BioResource supports many different research studies. If you are matched to a specific research study, you will be given information on the study. You can decide if you would like to take part or not.

The donated saliva sample will be assigned a unique study number and will be stored in a laboratory. The saliva in the sample pot will be analysed by extracting the DNA to get a reading of the genetic profile. Any remaining DNA or saliva will be stored at the laboratory for future use by the programme.    

DNA samples will be stored and permitted researchers may seek access to samples and related data, but you and your child’s personal details will never be released to researchers without your knowledge. Samples will be kept in secure locations.   

Best ethical and legal practice will be followed to ensure your information will be handled in confidence. Samples will be labelled with a unique sample study number and information from genetic and other tests will be stored separately from personal details in secure databases. Access to personal details will only be available to necessary members of the NIHR BioResource and regulatory authorities who check that this study is being carried out correctly. 

NIHR BioResource volunteers have contributed to many important research studies, including whole genome sequencing for babies and children in urgent care and the world's first transfusion of lab grown red blood cells.  It now has over a quarter of a million volunteers who contribute to valuable health research, and it works with NHS trusts across England.

D-CYPHR ran as a pilot project for two years (2021 – 2023) under the title The Young People’s BioResource, focussing on ages 11 – 15 initially.  

The pilot project ran in a small number of schools, starting in Cambridgeshire, Peterborough and Birmingham. This has included outreach visits and science lessons on DNA from the D-CYPHR team.  

During the two-year pilot phase the team conducted extensive consultation sessions with families across England.  

By joining D-CYPHR at the NIHR BioResource, you will be:  

  • Helping scientific research into childhood and adult diseases such as diabetes, heart conditions, mental health conditions, rare diseases, immune conditions and many more! Today there are around 1.7 million children and young people in England with a long-term health condition, and one in six children could have a probable mental health condition. Your contribution will be helping valuable research. 
  • Joining a community of health pioneers: we will share news and milestones on the project as it develops.

We currently cannot provide information on your genetic data or provide health assessments.  

Yes! Young people over the age of 16 can join the adult BioResource.

When joining D-CYPHR, children and young people will be asked to provide a saliva (spit) sample by dribbling around 2ml of spit into a collection tube.

If your child is currently too young, and does not dribble enough in their normal activity to provide a saliva sample easily, that is not a problem at all. If you are happy, you can still consent for them to join D-CYPHR and we will contact you in a couple of years to request the sample.

Please let us know at dcyphr@bioresource.nihr.ac.uk if you would like to delay your child’s saliva sample collection.

This research is about all of us. Before study, each sample and health information is depersonalised (personal details removed). While you won’t find about your own child's health, we will keep you updated with news as the programme goes on, and you will be helping millions of families affected by serious illness. 

Please register your interest to join D-CYPHR by completing the form below. If the form is not loading, or you encounter any difficulties, please email us at dcyphr@bioresource.nihr.ac.uk for assistance.