BioResource

Participating in the NIHR BioResource for Mental Health

A BioResource is a large bank of biological (e.g. 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.

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 twenty thousand biological samples and clinical and neuroimaging information from people who access services across South London and Maudsley NHS Foundation Trust (SLaM) 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.

Initially a blood sample will be taken (a maximum of 50ml – approximately 10 teaspoons). We may also ask for a sample of your hair, saliva or urine.

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.

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 SLaM. We will only do this if:

  1. We want to ask you to take part in a follow-up study.
  2. We find anything that we should tell your doctor about.

We will ask if it is OK 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.

You have the right to withdraw some or all of your information from the study at any time. Your care will not be affected.

In the case where our volunteers are not patients of SLaM/Guy’s and St Thomas’/King’s College Hospital patient or if your medical records are unavailable or too brief, we may ask you to complete a short interview or questionnaires which 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 5-10 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 will be available via the SLaM newsletter. You will not be referred to by name or identified in any report or publication, nor can any data be traced back to you.

You can call the team 9:00am to 5:00pm Monday to Friday or email:

Phone: 0207 848 5381
FREEPHONE: 0800 9951999
Email: bioresource@kcl.ac.uk

If you would like to make a complaint, you can contact:

Dr Gerome Breen
Group Lead for the NIHR BioResource for Mental Health
Institute of Psychiatry, King’s College London

Phone: 0207 848 0873
Email: Gerome.breen@gmail.com

South London and Maudsley NHS Foundation Trust Complaints Office
Phone: 0203 228 2444 / 0203 228 2499

 This information is also available to download as a printable leaflet about the NIHR BioResource for Mental Health.