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National Prion Clinic

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Welcome to the National Prion Clinic

COVID19 - National Prion Clinic advice and care.

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

 


The National Prion Clinic (NPC) is the national referral centre for prion disease and is part of the University College London Hospitals NHS Foundation Trust (UCLH). It is funded by the NHS to provide diagnosis and care for patients with, or suspected to have, any form of human prion disease (Creutzfeldt-Jakob disease, CJD). The clinic is integrally linked with the MRC Prion Unit at the Institute of Prion Diseases, a Postgraduate Research Institute of University College London. The NPC provides diagnosis and care for all forms of prion disease (inherited, iatrogenic, sporadic and variant CJD). We aim to review new patients within a week of referral. The NPC also plays a key role in facilitating research to promote early diagnosis and the development of potential therapies.