Some of the 11,000 people who’ve taken part in the ground-breaking Leicester research study, EXCEED, gathered at the University of Leicester’s Sir Bob Burgess building on 6 September to celebrate 10 years of the study.
The EXCEED study looks at the causes of long-term health conditions by collecting information about genes and lifestyle. A staggering 11,000 patients across the city and county have taken part in Exceed since it began 10 years ago. During that time, they have contributed to 54 research studies improving our understanding of heart, lung, liver, mental health as well as response to treatments.
Some of the research participants, healthcare workers and scientists who have been part of Exceed, first heard from the Director of the NIHR Leicester BRC, Professor Melanie Davies, before learning more about EXCEED studies on topics including: the genetics of COVID 19 and long-COVID, non-alcoholic fatty liver disease, treatment resistant depression, dynamic digital consent and abdominal aortic aneurysm screening.
The day also featured a digital art installation by Leicester based artist, Vishal Joshi, and culminated with a panel discussion chaired by renowned science journalist and broadcaster, Vivienne Parry OBE.
Scientific Director of the study, Dr Catherine John from the University of Leicester’s Department of Population Health Sciences, said:
“We wholeheartedly want to thank EXCEED participants for their contributions to locally-led, locally-relevant research that has already impacted our understanding of so many different health conditions for which improved treatments are needed.”
“It was wonderful that so many of them could join us today for this celebration, and to hear about what we’ve learned from studies they’ve contributed to.”
The study contributes to understanding long term health conditions and why they occur with more than one-quarter (2,750) of its participants having two or more long term health issues, reflecting the population of the UK.
EXCEED (Extended Cohort for E health, Environment and DNA) works with participants from around Leicestershire to try and better understand the underlying genetic and environmental factors behind long-term health conditions.
Participant data has been collected via electronic questionnaires, blood and saliva samples and height and weight measurements. The study also uses linked electronic health records to allocate patients to studies and avoid unnecessary repeat consultation.
Volunteers agree to 25-year follow-up so their information can be used to investigate different conditions over time.
Since recruiting its first patient on the twenty second of November 2013, the study (which had an initial recruitment target of 5000 patients) has recruited over 11,000 patients, taken over 9,000 genetic samples and collected 8,428 Covid questionnaires. Its findings have been used in 54 studies and have featured in 21 research publications, with more in the pipeline.
During her introduction speech Professor Melanie Davies praised those who run the study:
“It’s important to highlight the work of the team. It takes great strategy, vision and resilience to achieve a study like EXCEED. The team are gliding along like swans but beneath that there is a tremendous amount of energy and determination, and it never stops.”
In his introduction, co-lead investigator on EXCEED, Professor Martin Tobin, spoke about the initial goal of the study:
“We particularly wanted to have a study shaped in consultation for local participants, so it met their needs. Our other goal from a clinician standpoint is simply to understand how and why diseases occur. Patients may come to you, and you might be confident in a label for a condition, however over time the diagnostic criteria may change. Through collecting this data, we can better understand the causes of long-term conditions and we can be more confident in our labelling which and develop better studies and treatments.”
He thanked the team behind EXCEED, the participants and advisory boards that have all played a part in the study:
“We are grateful to everyone who has helped make the study such a success.”
Going forward the study is looking to address issues of inequity within genetic research.
This is something that researchers working on the study are all mindful of and this was reflected in parts of the symposium. During the day, a work by local artist, Vishal Joshi, part of the creative engagement fellowship which is funded by the Wellcome Trust and the University of Leicester’s Attenborough Arts Centre in collaboration with the Centre for Ethnic Health Research, was displayed.
Mr Joshi produced a digital portrait of a double helix comprised of subjects from Leicester’s Black, Afro Caribbean and Somali communities who were consulted via Leicester’s Afro Caribbean Centre. The piece was based on feedback from several focus groups aimed at increasing awareness of genomic research within the community.
Speaking about the project, which was co-led by Noemi-Nicole Piga and Dr Chiara Batini, Mr Joshi said:
“My mother is from Kenya, and my father from Uganda, and I have connected with my heritage, and the cultures of India and Africa, though family and community. In my work I have spent a lot of time questioning myself, my identity. With the genomics part of it, that was really interesting. As a kid I had cancer and that made me really question genetics and why certain people get certain diseases.”
He added:
“This project meant bringing the community together, making them feel like part of the creative project and made them feel their voices were being heard. In turn it made them feel more respected and it wasn’t just about the scientists…it was about the people who they were studying. They are working together. It sent the message to the community from the researchers that ‘we need each other’.
To find out more about EXCEED please click here.