The NIHR BioResource Centre Exeter – established in 2019 - is based within the NIHR Exeter Clinical Research Facility (CRF) and recruits volunteers from across the South West Peninsula into various common and rare disease programmes. These include the Rare Disease, Inflammatory Bowel Disease (IBD), Immune-Mediated Inflammatory Disease (IMID), Non-Alcoholic Fatty Liver Disease (NAFLD), and General Population cohorts. Using local clinical and research expertise, the Exeter Centre has become the lead site for the Rare Disease Monogenic Beta-Cell Diabetes cohort.
Since the pandemic, the Exeter team have celebrated hitting several recruitment milestones. They recruited their 1000th volunteer into the Research Tissue Bank/General Population BioResource in July 2022.
One volunteer comments on joining the NIHR BioResource:
"I have always wanted to give back and this seemed like a great opportunity."
In November, the team also celebrated recruiting their 100th patient into the Immune-Mediated Inflammatory Diseases (IMID) cohort.
Rare Diseases update
This year, in March, they recruited their 100th Rare Diseases patient. Of those 100, there are 42 patients with Monogenic Beta Cell Diabetes and 58 patients with Cystic Fibrosis.
Sophie Whiteley, Cystic Fibrosis Trials Coordinator, said:
"The CFT Rare Diseases BioResource is a great way to involve people with Cystic Fibrosis (CF) in research as it is open to anyone with CF.
"Often studies have a long list of inclusion/exclusion criteria such as age, lung function or transplant status which can mean certain groups don’t always have opportunity to take part.
"It’s refreshing to be able to approach anyone in clinic and response from people with CF has been great - we are grateful to everyone who has been involved in CFT Rare Diseases BioResource."
Aster Guardians Global Nursing Award 2023
A round of applause goes to Professor Maggie Shepherd, Exeter’s Trust Consultant Nurse (monogenic diabetes) and Associate Director for Nursing Research who won the Aster Guardians Global Nursing Award 2023 for her unwavering dedication to increasing awareness about Monogenic Diabetes through better diagnosis. She has led the establishment of the NIHR BioResource Rare Disease Monogenic Beta-Cell Diabetes cohort and recruits patients into the cohort at the Royal Devon University Healthcare NHS Foundation Trust.
At this year’s International Clinical Trials Day in May, the Exeter team had a stand at the Princesshay Shopping Centre in Exeter, where they spoke to members of the public about the BioResource and participation in research.
They also regularly attend local agricultural shows to engage with their local community, such as the Mid Devon County Show in July as well as the Honiton Agricultural Show in August, where they chat about clinical research in general and encourage people to consider taking part. People who have already volunteered to take part in research are always part of these outreach teams; these individuals can give people new to research a more clear idea of what taking part in research feels like from a participant point of view.
The team organise a host of family-friendly activities to attract people to the research stall including:
- the operation game
- a dummy with organs that can be taken out and put back together
- soft toy blood vessels of DNA and the common cold
- a Doppler so that people can listen to their own heart beat
- matching plastic bones to a large picture of a skeleton
- a pairs card-matching game of x-ray images
They also have a competition using a grip test challenge and a dexterity test with leader boards (the winners receive vouchers).
The team at NIHR BioResource Centre Exeter are working together with the NIHR Exeter Biomedical Research Centre (BRC), the Royal Devon University Healthcare NHS Foundation Trust Inclusion Lead, Sharifa Hashem, and Research Inclusion Working Group (the Royal Devon working group) to improve the diversity of their BioResource recruitment and public involvement groups, ensuring that people from diverse backgrounds and the LGBTQ+ community are represented.
The NIHR Exeter BRC and CRF recently developed a joint patient and public involvement and engagement (PPIE) strategy to enhance public involvement across the South West Peninsula.
Get in touch with the team
You can keep up to date with them on Twitter.
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