We began our work in 2007 as part of the National Institute for Health and Care Research (NIHR), England’s largest funder of health and care research.
The NIHR recognised the lack of participants for research was a barrier to medical improvement. It was even more difficult to find people with specific genetic variants.
From our inception, we have been a participant-focused organisation, recognising that it is the willing contributions of volunteers that might improve healthcare for all.
With our unique approach to participant involvement, we first recruited people with no known illness; we followed this with work on specific disease themes, including difficult-to-study rare diseases.
From our first activities, we have built a national resource that supports public participation in research. We started in Cambridge before moving nationally, developing to eight local centres between 2012 and 2017, before expanding to 13 centres during 2017, and recently to 18 in December 2022.
Our work is supported by an infrastructure that enables our participants to contribute to further research, catalysing medical research and trials.
We bring people together and lead research to help scientific discoveries to move more quickly from the lab to the patient.
The children and adults who take part in NIHR BioResource are vital to our role in medical research. They provide a sample and let us access their health records to help us understand disease.
They come from around the country and might be healthy volunteers or patients. They are willing to take part in research.
How the NIHR BioResource works
We recruit in three Cohorts. They are rare diseases, common diseases and healthy population. Due to the specialist work needed to support COVID-19 research we have a special section for that too.
Our 18 local centres bring together participants, university and NHS staff and commercial researchers. Our centres also help to recruit participants.
We coordinate the samples, data and analysis that drive growing knowledge to take research from the bench to the bedside.
We collaborate with more than 100 NHS Trusts.
We are part of the work of the National Institute for Health and Care Research (NIHR) – the nation's largest funder of health and care research – which is funded largely by the Department for Health and Social Care.
The three principles of the BioResource are:
|Single Consent||Sample collection, access to health-related records & recall based on genotype and/or phenotype – Research Tissue bank (RTB) and RD ethics|
|Single Repository||NIHR National BioSample Centre in Milton Keynes|
|Single Database||PID, clinical, phenotypic & genetic data, and access to NHS Health and Social Care Network (N3) national network|
Who benefits from the BioResouce?
Our approach benefits patients: we have created a more efficient route for new treatments to reach the clinic.
Our approach also benefits scientists and doctors working to understand and treat disease. We provide smarter data and resources for their work.
In doing so, we support them in their efforts to conduct better clinical research and trials. We increase the chances of their success.
With larger numbers of well-suited participants, both research and trials can be completed more quickly and efficiently.
Families and wider society benefit from better science and from more cost-effective research and better outcomes.
You can read about some of our successes here.
What makes our approach so successful?
It is a huge challenge to define the role of individual genes in common or rare diseases. Scientists can face the daunting task of looking for genetic variants in each of our more than 20,000 genes to identify possible suspects.
Often, those people who have an important genetic variation might be only a small minority, perhaps only one in one hundred or even one in ten thousand people.
For these reasons, a typical research study must recruit and study many thousands of people to find those who have the variation.
The BioResource approach is smarter. We, and many others, recognise that participants who have a genetic variation provide the most information to researchers looking for the causes of disease.
We have made it our mission to develop the information and resources needed for disease study and use them to accelerate development of diagnostics and treatments.
BioResource participants can be screened before a study to see if they have the genetic variant(s) of interest. Rather than putting everyone in the study, only those who test positive need be included.
Because fewer participants might be needed, studies into the causes of many diseases that previously would have proven too costly or time-consuming can be achieved.
For all well-designed research studies, a panel of people who are not affected is needed for comparison: the control group. Because of our knowledge of our participants’ genetics, we can as readily select those without the required variants of interest as well as those with them.
Do you want to use our resources?
Our volunteers, samples and data sets can support you in your research.
Find out more about using our BioResource.