• The National Prion Clinic will remain active during the current crisis, although some changes to our working practices are necessary. Face-to-face visits have resumed, following a successful patient specific pre-visit Covid-screening. Where face-to-face is not possible, we can make assessments of patients by telephone or video links to reduce the chances of inadvertent transmission of the virus. We will access tests and other investigations remotely and provide advice to GPs, hospital doctors and other healthcare professionals. We remain committed to providing care and support for patients, their families and carers, who have or are suspected to have CJD or other prion diseases.

    National Prion Monitoring Cohort research assessments at UCLH have resumed, having been on hold during the height of the crisis. The Open Day of the MRC Prion Unit at UCL will be postponed until further notice.

    For referring doctors we are accepting referrals of patients in whom you suspect CJD. Diagnostic and predictive genetic testing of the prion protein gene, and the Direct Detection Assay for variant CJD have resumed.

    Should you need to contact us, please call 0207 679 5142 and leave a message. This will be accessed remotely, and you will be called back by the appropriate member of staff. Alternatively you can send us an email on uclh.prion.help@nhs.net and we will respond as quickly as possible. Please bear with us as the situation is changing rapidly and some of our staff may be redeployed to other areas of the NHS.

    This is a very difficult time for everyone. We are aware that this will be adding to the very significant challenges that people with a diagnosis of prion disease and their families are already facing. The staff of the Prion Clinic will do whatever we can to support you through this stressful period. If you have any concerns, or need practical or emotional support, please do call your allocated nurse. We are also able to offer you a telephone counselling session with our psychology colleagues if you feel in need of specialist help.

    Prion diseases and Covid-19 vaccination

    We understand that the priority group into which a patient falls will vary according to several factors. Prion diseases, including CJD, may be one of these. Our interpretation of government guidance outlined here is as follows:

    Patients with CJD and/or symptomatic inherited prion diseases are at increased risk of serious illness from Covid-19 by virtue of having a chronic neurological condition

    •Most patients aged 16-64 years should therefore be in priority group 6;

    •Patients who are over 65 years old and/or living in a care home will be in a higher priority group and should be vaccinated with that priority; •Some patients may be considered extremely vulnerable clinically, and would thus fall into priority group 4. We suggest that this should be decided at the discretion of the vaccinating healthcare team.

    •It might not be appropriate to vaccinate some patients who are near the end of their lives due to prion disease. Symptom free carriers of prion protein gene mutations are not at increased risk of COVID19 and should be vaccinated according to their age and/or any other relevant factors.

    Currently available evidence on the approved vaccines at the time of writing reveals no prion disease-specific contraindication to vaccination.