If you are one of those who’ve donated samples at any one of our collaborating NHS Trusts or 13 centres across England, then thank you for taking part – your contribution is not only helping researchers, it’s also helping to improve healthcare for patients.
So you’ve provided a blood sample at the NIHR BioResource clinic or sent in a saliva sample – what happens next? Where does it go?
Its journey from test tube to new medical discovery involves consent, anonymity, robots and sub-zero temperatures – starting with you posting back your saliva kit or with the research nurse who collects your blood sample so that your sample arrives at the NIHR National Biosample Centre in Milton Keynes, where it is processed with a unique anonymised number and scanned into a database.
Meanwhile your consent and some of your details are sent to the NIHR BioResource central team in Cambridge, where they are securely stored.
In the Milton Keynes laboratory, technicians carefully separate the blood samples into smaller volumes of whole blood, plasma or serum. A centrifuge (a machine that spins the blood) separates the plasma and serum from the blood cells, which are then pipetted by robot into smaller tubes. Timing is key and to avoid the samples being spoiled, this whole procedure takes place ideally the same day the samples arrive in the lab.
Once separated, the tubes containing these smaller volume samples are stored in a freezer at -80C – storage which is colder than the Antarctica, where the average temperature between April-September 2021 was -60.9C.
The saliva samples donated however, are a little different. They are more stable and can be stored in a dark area at room temperature for several months, without any degradation.
In the past 15 months, participants to the NIHR BioResource have donated almost 62,000 samples of blood and an additional c. 7,000 saliva samples. Thank you for being part of such an achievement whilst in the midst of the coronavirus pandemic.
Genotyping your sample
DNA, the genetic code of a person, is extracted by robot from the cells in the whole blood samples as well as from saliva samples. Once the DNA has been quality checked, it is prepared and sent to a specialist lab for genotyping, this generates data on over 1 million bases (chemical building blocks that make up the DNA molecule) of your genetic makeup, also called your genome. Although technology has made it faster to process DNA and run tests, the process is complicated and is run on thousands of samples in a batch and so can take a number of months to complete.
When all the samples are processed and stored, the information from the laboratory is sent back to the NIHR BioResource central team and held on another secure database. Intentionally, only a limited number of our team members from the NIHR BioResource have access to this data.
Helping researchers - anonymously
Your anonymity is always guaranteed: your samples are all anonymised with a unique barcode and have no participant details attached to them. They remain in the lab facility until a researcher requests them, by applying to use the NIHR BioResource panel.
If their study is approved, the team carefully select the right people based on their genotype (their genetic makeup), phenotype (a person’s traits such as age, gender, height, blood group etc.) and the health data they provided. The NIHR BioResource can then provide researchers a rich resource of anonymised health data and samples which they can use for their research.
Our research programmes
We run a core research programme into various common and rare health conditions, including in inflammatory bowel disease, immune-mediated inflammatory diseases, mental health, non-alcoholic fatty liver disease and rare genetic diseases. The NIHR BioResource also works closely with NHS Blood and Transplant with thousands of blood donors joining the NIHR BioResource over the past few years.
We’re just about to launch the Young People’s BioResource. The initial focus will be inviting children aged between 11 and 15 to take part in research. The NIHR BioResource is working with school networks so that many school children can participate in research if they wish to. As the programme expands it will be possible for children from birth up to the age of 6 to join the programme.
The COVID-19 pandemic didn’t slow the NIHR BioResource team down either. We created a new research programme to investigate COVID-19 and are supporting more than 45 research studies, collecting more than 9,000 samples in the last year.
Why do we need biological samples in advance?
The NIHR BioResource aims to speed up research into a range of health conditions by bringing participants and researchers together. We have created a panel of more than 200,000 people all over the country who are willing to take part in research, and who can be matched to suitable research studies.
Depending on the research study, it can take researchers several years just to find a group of people who are eligible, so by having these samples readily-available we can accelerate even more health research.
On joining the NIHR BioResource, participants donate a small blood or saliva sample and answer a health and lifestyle questionnaire. Researchers can then use the samples and data that are readily available for research, and the BioResource team can invite suitable participants to take part in further studies if required. This could be anything from answering a questionnaire, donating another sample, completing computer-based tests to joining a clinical trial.
Some participants may never be called up to attend a research study. However, the sample they donated on joining could potentially be used for hundreds of research studies taken from the smaller samples stored at Milton Keynes and without the participant being required to do anything else, while still contributing to ground-breaking discoveries. Having access to this vital ready-made resource of willing participants is benefiting researcher studies, and ultimately patients and the NHS.
Dr Nathalie Kingston, Director of the NIHR BioResource said: “Research is so much more than just a drug trial, our panel take part in a whole range of activities that benefits health research.
“The last year has shown how important research is and we have seen a rise in people wanting to take part in all studies, and not just relating to COVID-19.
“Research is for everyone, no matter your age, background or what health conditions you have, every single donation is important. Researchers need access to many samples, data and volunteers so they can compare and contrast different diseases. We have thousands of people taking part and it is doing something positive without having to give much of everybody’s time.
“We always need more people to take part in research because this is the only way we can find answers to some important health questions and make new discoveries. Just donating a small blood or saliva sample could make a difference and actually help save lives.
“We are fortunate to have so many people willing to help researchers, our participants enjoy it and come back to volunteer for other studies. I want to thank everyone who has taken the time to take part; research cannot happen without the contribution of members of the public.”