The aim of the Open Day was both to share progress on research as well as hearing from patients, families, and supporters about what matters most to them.
The Institute Director, Professor John Collinge, gave the keynote speech detailing the background to the types of Prion disease and why they are particularly unusual. There were further updates about the PRN100 antibody treatment that was given to a small group of patients and the funding and challenges required to support a further early stage trial.
We also heard from Dr Mok about an important update on biomarkers in inherited prion disease. A biomarker is a measurable signal in the body that can help us understand whether a disease process is active, sometimes before clear symptoms appear. This may provide an opportunity to give treatment before major damage to the brain tissue occurs.
Dr Leah Holm-Mercer then spoke about how brain activity may change in the early stages of prion disease, before diagnosis is made. She described work using EEG and MEG, two non-invasive ways of measuring the brain’s electrical and magnetic activity. Subtle changes in brain function may be detectable earlier than obvious clinical decline. If so, these measures could help researchers track very early disease and judge whether treatments are working at a stage when intervention may have the best chance of success.
There was also a contribution from the Cure CJD charity that raises funds for future research in CJD and the CJD Support Network that provides practical and emotional support to families.
The afternoon was given over to 3 discussion groups led by our clinic staff.
• Patient and Public Involvement and Engagement group (PPIE): Rachel Williams
• Biomarkers & Risk Prediction: Dr Mok
• Treatments for CJD: Professor Simon Mead
For those who were not able to join us, a summary of the day is available to download below.