Queen Square Quality Star Award for December 2022

Thanks UCLH for the Quality Star Award for the National Prion Clinic in recognition of the work we put into our Open Day in November 2022

“The MRC Prion Unit Open Day. The open day was a truly patient centred approach to engaging patients and families in the future of the service. A huge amount of planning and work went into planning a whole day of talks and activities and the day was received extremely positively.

The MRC prion unit at UCL open day 2022 was held on November 29th. Rachel and the team welcomed 80 visitors to the unit who have been affected by prion disease. There were a series of talks. Professor John Collinge updated on the progress on the development of treatments, specifically PRN100, a treatment developed by the unit and given to 6 patients with CJD under special license at UCLH. He discussed findings, future plans for the treatment and took questions. Dr Mok gave a talk on his research into predicting disease onset, to understand when to treat if a treatment were available. The Cure CJD campaign sent a video to discuss their fundraising work.

The talks were followed by lab tours and poster presentations from unit scientists. The afternoon consisted of small group discussions, Dr Edgar Chan hosted a talk on living with the risk of prion disease, Prof Simon Mead hosted the group discussing treatments in development and Rachel Williams hosted a discussion group about future directions of research for better patient care and engaged attendees in the development of a patient and public engagement group for prion disease to guide these projects and input into the continuous improvement of the patient and carer experience.”

Prion Service Team: Regina Appenteng, Rachel Bambi, Dr Edgar Chan, Professor John Collinge, Dr Tom Coysh, Dr Leah Holm-Mercer, Sakib Kasem, Sarah Mazdon, Kirsty McNiven, Professor Simon Mead, Dr Tze Mok, Veronica O’Donnell, Dr Peter Rudge and Rachel Williams