Participating in the NIHR BioResource for Mental Health
A BioResource is a large bank of biological (e.g. saliva, blood), clinical (e.g. medical records) and neuroimaging information (e.g. brain scans) that is usually used for scientific/medical research.
The purpose of the National Institute for Health Research (NIHR) BioResource for Mental Health is to facilitate research that aims to improve our understanding of different mental illnesses and identify new and better treatments for neurological and psychiatric disorders. It is part of the NIHR BioResource, the central biobank which supports research into a wide range of health problems.
Our aim is to bring together groups of healthy volunteers, patients and relatives who have agreed to be contacted and can be invited to participate in relevant clinical research. Data collected from this research forms a valuable resource that can support research across the different centres.
This information is also available to download as a printable leaflet about the NIHR BioResource for Mental Health.
We are collecting biological samples and linked clinical and demographic information from people who experience or may have experienced mental health disorders. We aim to create the largest biobank related to mental health.
If you would like to volunteer for the BioResource, or just find out more about our projects, you can visit our websites by clicking on the links below.
On the websites, you can learn about the aims of the projects, find out what taking part might involve and get detailed information in the participant information sheet. If you decide to participate, please register, sign the consent form and follow the instructions to complete the questionnaires and provide a saliva sample.
The Genetic Links to Anxiety and Depression (GLAD) Study, led by the National Institute of Health Research (NIHR) Mental Health BioResource and researchers at King’s College London, in collaboration with researchers at Ulster University, University of Edinburgh, and Cardiff University, is a project set up to support studies exploring risk factors for depression and/or anxiety.
The Eating Disorders Genetics Initiative (EDGI), led by the National Institute for Health Research (NIHR) Mental Health BioResource (part of the NIHR BioResource), researchers at King’s College London and Beat, the UK’s eating disorder charity, is a project set up to support studies exploring risk factors for eating disorders.
Providing a sample is easy; usually you will be asked to provide a saliva sample, which can be done easily in the comfort of your own home. We may also ask for a sample of your hair, blood or urine, which may involve visiting a clinic.
Your samples will be de-personalised (all personal information will be removed and replaced with a unique numeric code), processed and then stored at secure laboratories at the National Biosample Centre, part of the NIHR BioResource.
The de-personalised samples (genetic data) will then be combined with your clinical records. Finally, we will also ask you whether you are happy to be contacted in the future regarding participation in follow-up studies. Samples can only be de-anonymised by authorised individuals who are responsible for securely storing the link between the numeric code and your personal information. We will only do this if:
- We want to ask you to take part in a follow-up study.
- We find anything that we should tell your doctor about.
If you are contacted for any follow-up studies, it is up to you to decide whether you would like to participate or not.
You have the right to withdraw some or all of your information from the study at any time. We will need to keep some basic details for our records. If you withdraw, your care will not be affected.
We mostly request saliva and providing a sample is painless. It can be provided in the comfort of your own home and full instructions are provided with the kit.
There are no special compensation arrangements in place for the unlikely event that you are harmed by taking part in this initiative. If you feel that you have not been dealt with properly, you can make a complaint through normal NHS routes.
There will be no immediate benefit to you at the time of participation, but you will be making a contribution to science. In addition to this, the knowledge gained as part of this and subsequent research may in the future help you and other sufferers of neurological and psychiatric disorders.
The results of studies using the BioResource samples will be published in scientific journals, and will be available on our website, when the studies have been completed. Published results will not refer to any participants by name nor will any data be traced back to you.
Please visit the websites shown above for further information and to sign up.
NIHR BioResource Maudsley Centre
Phone: 0207 848 5381
South London and Maudsley NHS Foundation Trust Complaints Office
Phone: 0203 228 2444 / 0203 228 2499
For more information about General Data Protection Regulation (GDPR) for the NIHR BioResource, visit their website: https://bioresource.nihr.ac.uk/gdpr/
For more information about the NIHR BioResource, visit their website: https://bioresource.nihr.ac.uk/