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How medical research is aided by 140,000 volunteers in the NIHR BioResource

How do researchers find the right people to participate in their studies?

Sometimes, it is enough to advertise for willing volunteers from their local population.

Dr Michelle Linterman, of the Babraham Institute, has used the NIHR BioResource. Picture: Keith Heppell
Dr Michelle Linterman, of the Babraham Institute, has used the NIHR BioResource. Picture: Keith Heppell

But often, they need to recruit individuals with particular characteristics or a specific genetic make-up.

In this scenario, they can turn to the NIHR BioResource for Translational Research in Common and Rare Diseases – a phenomenal database of volunteers across the country who are willing to take part in studies.

“The BioResource started in Cambridge and is now a national resource,” said Prof John Bradley, who leads it. “There are about 140,000 volunteers, which includes people from the general population and people with common and rare diseases.”

“When individuals join the BioResouce they provide us with a sample – either blood or saliva, and consent for us to extract their DNA and analyse that from a genomics perspective.

“They complete a health and lifestyle questionnaire. They give us consent to access their medical records and they agree that we can get in touch with them based on any information we hold about research studies that investigators are interested in performing.

“If investigators want to do a study where they require individuals with very specific characteristics, related to their health, lifestyle or genetics, then we can go into our database and see if we can find them for them.”

Wherever they are recruited, volunteers sign a single consent form. Their samples are securely stored at the National Biosample Centre, also run by NIHR (National Institute for Health Research), and their data is held on nationally approved databases.

“We collate a very rich database,” said Dr Bradley, a consultant renal physician and director of research and development at Cambridge University Hospitals.

There are 13 local NIHR BioResource centres across the country, including the Cambridge centre directed by Dr Bradley on the Addenbrooke’s site, which has recruited more than 17,500 volunteers who live, work or study in the region since its inception in 2005.

Volunteers donate a sample of their DNA
Volunteers donate a sample of their DNA

At a collaboration event on Babraham Research Campus in June, Dr Bradley explained how the BioResource played a critical role in many important studies, thanks to the depth of its database and the commitment of its volunteers.

A group in Oxford, for example, turned to the BioResource as it studied how variations in the APOE gene were associated with cognitive functions and dementia.

Dr Bradley said: “They wanted to look at look at young and elderly individuals with a range of genetic variations or diplotypes in the APOE gene and these variations had quite variable frequency in the general population, from 0.6 to 0.02 per cent, so some of them were going to be quite hard to find. They also wanted them stratified by age. They started off trying to find these individuals in their local population and were really struggling.

“They came to us at the NIHR BioResource and we have been able to find several hundred volunteers to help them complete the study.

“They came from across England, and were required to go to Oxford to undertake the cognitive studies. It’s an example of our ability to find individuals but also of the commitment of individuals in the Bioresource to participate in research.”

The BioResource also supports the efforts of drugs companies to create new therapies.

GlaxoSmithKline (GSK), for example, turned to the BioResource after struggling to secure the volunteers needed for research into a potential drug that antagonised an opioid receptor.

“There was some evidence that variations or polymorphisms in this receptor could be an important determinant of addictive behaviour,” said Dr Bradley.

“They were interested in particular in alcohol dependence. They wanted to look at the effect of their drug and see if individuals with variations in the receptor might be more or less susceptible to its effects.

The NIHR BioResource was invovled in the pilot for the 100,000 Genomes Project
The NIHR BioResource was invovled in the pilot for the 100,000 Genomes Project

“They wanted individuals with certain physical characteristics, for example, BMI within a certain range, and social drinkers, and the specific polymorphisms in the receptor.

“We were able to find volunteers from three of our centres – Oxford, Cambridge and London. In this case, it required volunteers to visit Cambridge on several occasions to go to the clinical centre that GSK has, and have an overnight stay, reflecting the commitment of the volunteers to help us with research studies.”

The BioResource also led the pilot for the now-completed 100,000 Genomes Project, which has helped to create a new genomic medicine service for the NHS, aiding diagnosis and assisting in the development of new and more effective treatments.

“We recruited over 13,000 patients across 15 different rare diseases,” explained Dr Bradley. “Often these patients were recruited as trios – so we had perhaps a child and two parents who would be contributing DNA for us to undertake whole genome sequencing.

“This means we have whole genome sequences on a geographically spread population of individuals with a rare disease and their often unaffected parents.

“The prime aim is to identify whether we can find a genetic cause for the rare disease but we also then have a panel of volunteers who have consented to be contacted about any sort of research study.”

In Oxford, cardiologist Hugh Watkins was interested in looking at cardiomyopathies that might lead to sudden death

“He wanted to look at genetic variations associated with these cardiac conditions and study in detail the hearts of volunteers, who may have these variations but have not yet manifested any particular health problems. We wrote to just over 2,000 volunteers explaining that if they took part we might identify a problem and 95 per cent said they would want to know. We’ve found 14 people that Hugh can study in depth.”

To volunteer for the Cambridge BioResource, email cbr@bioresource.nihr.ac.uk or visit cambridgebioresource.group.cam.ac.uk for more.

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