I am a young person. Can I help?
Yes! Without participants, research cannot progress. If you are between the ages of 11 and 15, with or without a health condition, we'd like your help with this research by joining D-CYPHR, the DNA, Children + Young People's Health Resource at the NIHR BioResource. There are already over 250,000 participants, mainly adults, signed up to participate in research and now we are building a secure library of de-personalised data and information from children and young people.
Our aim is to continue in-depth research into long-term health conditions. This knowledge can then be translated into treatments to help those affected.
What do we do?
What happens when I join?
If you give your assent (agreement) and your parent/guardian gives consent (permission) to join D-CYPHR, you will be asked to donate a small saliva sample and complete a questionnaire about your health and lifestyle.
The saliva sample will be used to extract cells and DNA. This is so we can study how genes work to keep us healthy and their role in whether treatments work or not.
We will ask your parent/guardian to fill in a consent form that describes how your sample might be used in research. You will also need to fill out a form to confirm you agree to be involved. Finally, we’ll ask you and your parent/guardian to grant us access to your health, education and social care records. For more information on what your participation entails, please see our participants page.
In D-CYPHR, both you and your parent/guardian need to agree that you can take part. Once you've joined, your valuable data and or samples may be used by researchers to help uncover causes and treatments for different diseases.
You might also be invited to take part in studies that require more information from you, or another biological sample. For these invitations, you'll receive lots of information on exactly what is required and you can always say 'no'.
If you and your parent/guardian decide to take part, here are the steps you will take:
Although other BioResource programmes might be asking for a blood sample, the recruitment of children and young people to the BioResource through schools is only asking you to provide a saliva sample. If you decide to take part, we will send you a saliva pot and you will be asked to spit into it. Then, your parent/guardian will post it back to us in the provided pre-addressed and pre-paid postage box and we will be able to look at the DNA in your spit.
Agreeing to take part
It is very important that both you and your parent/guardian are happy for you to take part in D-CYPHR. After you attend the information session, your parent/guardian will be asked to give permission for you to take part by signing a form – this is called giving ‘consent’. You will also be asked if you are happy to take part – this is called giving ‘assent’. If your parent/guardian does not give permission, you will not be contacted about taking part.
You and your parent/guardian can change your mind about taking part at any time and you don’t have to tell us why. If you would like to withdraw from D-CYPHR, please email us at firstname.lastname@example.org or you can follow the steps to withdraw from D-CYPHR (part of the BioResource).
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