The NIHR BioResource is a panel of thousands of volunteers, both with and without health problems, who are willing to be approached to participate in research studies and trials on the basis of their phenotypic and genetic make-up to develop new treatments for a range of diseases and investigate the links between genes, the environment, health and disease.
Headquartered at the NIHR Biomedical Research Centre (BRC) at Cambridge University Hospitals NHS Foundation Trust (Addenbrookes), the NIHR BioResource currently has eight centres in total as follows:
NIHR Cambridge BRC
NIHR Leicester Cardiovascular BRU
NIHR Imperial BRC
NIHR Oxford BRC
NIHR University College London Hospitals BRC
NIHR Guy's and St Thomas's Biomedical Research Centre
NIHR Maudsley BRC
NIHR Newcastle BRC (joining April 2014)
The NIHR BioResource supports early translational research (experimental medicine) studies into a number of conditions. The BRCs and BRUs have specific expertise or lead on a particular area of research for the NIHR BioResource. For example, the NIHR Cambridge BRC leads on immunology and rare diseases; the NIHR Leicester Cardiovascular BRU leads on cardiovascular studies; the NIHR BRC at SLaM leads on mental health; the NIHR Oxford BRC on metabolism.
The NIHR BioResource is building on established patient and volunteer groups at each participating BRC or BRU and aims to have 100,000 volunteers by 2017.
The NIHR BioResource for Rare Diseases has been established to identify genetic causes of rare diseases, improve rates of diagnosis and to enable studies to develop and validate treatments; thus improving care for those with rare diseases and their families. The NIHR BioResource for Rare Diseases has been awarded funding for the clinical application of Next Generation Sequencing Techniques to study the genomes of affected participants and their relatives. Participants with rare diseases in the following areas are the initial focus of research: Infection and Immunity, Neuroscience, Rare Diseases (including Rare Cancers) and Cardiovascular Disease. For more information, visit this link.
Research charities, industry and researchers wishing to collaborate with the NIHR BioResource can contact NOCRI. The NIHR BioResource supports companies and researchers in recruiting participants, from patients and their families to healthy volunteers, to undertake experimental medicine studies that have the potential to advance the understanding of disease mechanisms, identify potential drug targets, and improve insight into the therapeutic potential and limitations of existing and emerging therapies.
Volunteers sign up or register online by visiting the NIHR BioResource website. All the contact details for each centre are there and appointments are made by phone or email.
At their first appointment they will be asked to donate a sample of saliva or blood that will be used to provide some information about their genetic make up (their genotype). They will also fill in a short questionnaire that provides some information about their health and lifestyle and basic family history (their phenotype). On the basis of their genotype and/or phenotype volunteers are selected to participate in studies. Volunteers are invited to participate in up to four studies per year. On each occasion it is up to the volunteers to decide (on a study by study basis) whether they would like to take part.
Anyone can register to be part of the NIHR BioResource. Most centres accept individuals aged over 16; Cambridge accepts children from age six.
As a member of the NIHR BioResource, volunteers may receive invitations from a research team to participate in research studies being supported by the BioResource. This will include an information sheet detailing the specific requirements of the study and a participation slip for them to complete and return. Volunteers are under no obligation to take part in any study and they are always in control of their participation. It is closely monitored how many times volunteers are invited and volunteers participate in a maximum of four studies a year.
Different studies require different levels of involvement from volunteers so it is important for them to read the information sheet carefully to find out what is being asked of them before making a decision. For example, some studies require that they provide a sample of blood, others that they complete a online questionnaire, some studies may ask them to have a scan (an MRI for example) and some may require an overnight stay in a clinical environment.