DNA, Children + Young People’s Health Resource

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 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.  

By joining D-CYPHR at the NIHR BioResource, young volunteers 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.  

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. 

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. 

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.

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

You can also join through an in-clinic appointment at select local BioResource centres. At some of our centres you can donate a blood sample if that is your or your child’s preference.

Email dcyphr@bioresource.nihr.ac.uk to learn more about in-clinic appointments.