A BioResource is a large bank information that is usually used for scientific or medical research. This includes biological (such as blood), clinical (such as medical records) and neuroimaging information (such as brain scans).
The purpose of our 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.
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.
We aim to collect up to 20,000 biological samples and clinical and neuroimaging information from people who access services across South London and Maudsley NHS Foundation Trust and other trusts each year.
If you would like to volunteer for the BioResource, or just find out more about the project, you can contact the team. Following this, if you decide to volunteer, you may be able to give your consent via post or alternatively one of the research team will arrange to meet with you.
They will give you a detailed explanation of the initiative, go through all the information with you and answer any questions you might have. If you decide to participate, you will be given an information sheet and asked to sign a copy of the consent form; you will also get a copy of the signed consent form to keep.
Your samples will be anonymised (all personal information will be removed and replaced with a unique numeric code), processed and then stored at secure laboratories at the Institute of Psychiatry, Psychology and Neuroscience (IoPPN).
The anonymised samples (genetic data) will then be combined with your clinical and/or neuroimaging records that have also been anonymised. 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 at the Trust.
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
We will ask if it is okay for us to contact you in the future to take part in any more studies. If you are contacted for any follow-up studies, it is up to you to decide whether you would like to participate or not.
If you are not a patient of our Trust, Guy’s and St Thomas’ Hospital or King’s College Hospital, or if your medical records are unavailable or too brief, we may ask you to complete a short interview or questionnaire. This may take up to 60 minutes of your time.
It can be slightly uncomfortable when you have your blood taken – but it is the same procedure that would be used in an NHS clinic or at your doctor's surgery.
If you are asked for hair samples, one of the hair sampling procedures may involve pulling a small number of hairs from your head (perhaps five to 10 hairs). There might be a slight pain as the hair is pulled.
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 available to all volunteers upon completion. Results will be discussed in publicly held meetings and information about these meetings may be published on this website or a partner website. You will not be referred to by name or identified in any report or publication, nor can any data be traced back to you.