The NIHR BioResource is a unique and powerful resource for studying disease mechanisms and for investigating the links between genes, the environment, health and disease; enabling scientific discoveries as well as facilitating advances in medicine for the benefit of patients.
Additionally, 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 therefore missing clues and opportunities to help prevent illness in children and in the adults they will become. Researchers want to explore the genetics of a range of diseases to understand more about how to identify illnesses early, what causes illnesses and what treatments work best for which people. By your child joining D-CYPHR at the NIHR BioResource, you will be:
- Helping scientific research into childhood and adult diseases
- Encouraging children to have an interest in health research
Most of the research we support at the NIHR BioResource involves understanding the role that genetics plays in disease. For example, we now know that some people are more likely to respond to certain heart medications depending on their genetics. We also know that genetics makes some people more likely to get some forms of cancer earlier in life. Researching this means we can develop ways to identify cancers earlier, giving more people a better chance of a full recovery. Researchers want to explore the genetics of a range of diseases to understand more about how to identify illnesses early, what causes illnesses, and what treatments work best for which people.
Genetic research is seen as one of the key opportunities to transform medicine and improve the health of our nation in the coming years. A lot of progress has been made already. For example, we are able to test the genetics of cancers and choose specific drugs that are more likely to cure people. We can also now carry out rapid tests for children with diabetes to select which medication will work best for them. This means that many are able to avoid painful daily injections and have tablets instead. We are also starting to understand that environmental factors, such as where you live or the experiences you have in the first 25 years of life can interact with your genetics and affect the severity of diseases you get later in life – such as heart disease or cancer. Understanding how genetics makes a person more likely to get a disease, or suffer from a more severe form, and to understand which medicines will work best for them depends on researchers being able to study our genetic makeup.
A lot of the research in the field of genetics has focused on common, adult diseases. However, genetics also 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. Although there are a lot of volunteers already participating in genetic research through the BioResource, these are mainly adults. As it is so important to study childhood diseases, we are now focusing our attention on identifying young people between 11 and 15 years old who would like to help in these research studies. To make all this possible the NIHR BioResource launched the ‘Young People’s BioResource’ in 2021. In autumn 2022, we began transitioning to a new name for the initiative: D-CYPHR, the DNA, Children + Young People's Health Resource. Please note that any documents that require ethics approval, such as information sheets or expression of interest forms, will refer to Young People's BioResource until the next round of amendments. This does not impact any of the ethics supporting the programme itself, such as what we are asking of participants or what we do with the data gathered. The only thing we have changed is the name.
Perhaps one of the most important groups in any research study is the group of people who are called the ‘controls group'. 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 ‘controls group’, researchers can compare different things in the ‘disease’ and ‘controls’ groups to understand what is different about those who have the illnesses.
One of the first things that D-CYPHR aims to do will be to create this important ‘controls group’ for young people. So, we have been working with the Anna Freud National Centre for Children and Families and a group of schools since summer 2021 to invite young people from the general population to join the programme, with their parent's/guardian’s consent.
- First, we will invite you to an information session, where we will talk to you and your child(ren) about the project and ask if you want to help. You can ask us any questions you like and you don’t have to agree if you don’t want to.
- You and your child(ren) give permission to take part by completing the consent and assent forms respectively.
- Your child(ren) will be asked to fill out a questionnaire about their health (e.g. general health and any illnesses they have suffered in the past or currently), personal characteristics (e.g. height, weight, if they are left or right-handed), their lifestyle (e.g. if they are vegetarian, and how much exercise they take). They will have the option to complete a second questionnaire about their free time, family, friends and school.
- Your child(ren) will also be asked to dribble into a saliva pot. You will be asked to post this back to the BioResource in a pre-paid addressed package that just needs to be put into the post box. We will use the saliva sample to analyse your child(ren)’s DNA and the details of your child(ren)’s genetics will be securely stored by the BioResource.
- We will also need your permission to access relevant sections of your child(ren)’s medical, social care and education records. We may contact their GP or use their NHS number or other personal details (e.g. name, date of birth) to access these records.
Once you have consented (given permission) and your child has assented (agreed they want to participate), your child(ren) will become members of the D-CYPHR group at the NIHR BioResource. People who join D-CYPHR can be contacted and invited to take part in specific studies. Participating in a study might involve different things, for example, answering more questionnaires about a specific issue or additional tests, for example, a blood test. For each study, young people and their parents/guardians will be given all the details and they can choose whether they wish to participate or not. Involvement in these additional studies is completely voluntary – there will be no pressure to take part, and young people can choose not to participate at any time.
In England, children under 16 years of age are not legally able to agree to participate in medical research (called ‘consenting’) without their parent/guardian’s agreement. Instead, parent/guardians consent to their children being involved and we also get agreement from the child – this is referred to as ‘assent’. For a young person to participate we need both the parent/guardian’s ‘consent’ and the child’s ‘assent’. We need to have both of these documented in writing. Children of parents/guardians who do not consent will not be invited to participate. You can withdraw consent at any point and your child(ren) will be removed from the BioResource.
Once a child has agreed to participate, they will remain a volunteer in the BioResource either until they turn 16 years old or if they decide not to participate anymore. When a child turns 16, they will be re-contacted and asked to re-consent to participation for themselves, as they will no longer need their parent/guardian’s permission. As the parent/guardian of a member of D-CYPHR, you yourself will not be a member of the BioResource and you will not be required to provide a sample nor will we access your health or other records. Should you wish to, you can find out more about becoming a BioResource volunteer.
Your child(ren)’s 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 your child(ren)’s genetic profile. Any remaining DNA or saliva will be stored at the laboratory for future use by the BioResource.
DNA samples will be stored and other researchers may seek access to samples and related data, but your 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 that your and your child(ren)’s 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.
We know that our health is impacted by lots of different things like our genes, the environment and how work or school is going. When we talk about ‘environment’ we mean the things that make up a young person’s day to day experiences – it can include things like where they live, what part of the country they live in, if its rural or in a city, the structure of their family or the kind of school they go to. Research is showing that a person’s genetic makeup can affect how they cope with different environments. We want to study how this affects health and wellbeing.
One example of how we might use medical records is the study of COVID-19. Thankfully, COVID-19 infection affects very few children, however a small number do get the illness, and they can also become unwell with it. Even though most children don’t get COVID-19, we don’t know whether vaccinating all children will stop those very few from catching it. By linking to participants’ health records, we can learn about whether they have had COVID-19, if they get it severely, who has been vaccinated, and whether their genetics plays a role in this.
Another example is young people’s health and wellbeing. We know it can be affected by environmental factors like health, home circumstances, where they live, and how they do at school. We would like to invite young people to take part in studies looking at mood and the range of things that affect it, and how genetics can play a part. A person’s social care and education records can help us study these links.
So far we have started to explore this with adult COVID-19, mental health problems and eating disorder studies – we now want to understand how it might work for young people.
A young person or their parent/guardian can decide they want to withdraw from D-CYPHR at any time. If they tell us they no longer want to participate, we will contact the child and parent/guardian to ask if they want their samples we centrally hold to be destroyed, and if they want their data to remain in the BioResource or not. However, if a child (through their parent/guardian) has been contacted about joining additional research studies, has chosen to participate in them and the data has already been analysed, we will not be able to remove their data from those research studies.
Parent Information Sheet and Frequently Asked Questions for Parents/Guardians
Find out more & register your interest
Email us if you are interested in taking part or would like more information on D-CYPHR, the DNA, Children + Young People's Health Resource
If you would like to print a copy of the above information you can download a PDF version here.