In 2019 the Professor J. Knight group, supported by the BRC Genomic Medicine theme, worked in partnership with a patient interest group to share their research findings with patients across the country. Giuseppe Scozzafava, a researcher and lab manager at the Wellcome Centre for Human Genetics, discusses how that relationship helped to disseminate their research more widely.
What is your research about?
The GenExpressID study aims to understand the inherited causes of ankylosing spondylitis. Ankylosing spondylitis (AS) is a chronic inflammatory condition affecting the spine and joints between the lower spine and pelvis, causing loss of mobility and deterioration of quality of life. It affects around 1 in 200 people and in the UK this is equivalent to 315,000 people. It is part of a group of disorders described as Spondyloarthropathies (SpA). We are putting together a detailed map of the functional genomic landscape of the disease and how genetic variants act. Armed with this information we hope we can find a disease-specific signature, which, in turn, would inform the development of new therapies.
What was your project?
We recruit patients to the study through clinics run by participating Principal Investigators at the Nuffield Orthopaedic Centre in Oxford and at the Royal United Hospital in Bath. We wanted to engage with a national patient interest group to involve patients and share our findings with them, and so we worked with the National Axial Spondyloarthritis Society (NASS). In June 2019 we gave a presentation at the NASS Members National Meeting in Birmingham.
What was the result of your project?
We were able to give an overview of our current research to an audience of around 100 patients, carers and medical professionals. Following on from the meeting, we wrote a short piece that was published in the NASS magazine, AS News. Through the magazine we reached around 4,000 NASS members and 500 health professionals.
What did you learn from the project?
The main challenge we faced was finding the right channel through which to contact patients. Contacting NASS proved to be very useful and it gave us access to an interested audience. I would advise other researchers to find and contact your relevant patients’ groups; you will find that they are very interested to have someone talk to them about your research.