The Generative Brain

National Prion Clinic (UCLH and UCL), London

UK national referral centre for prion disease at the National Hospital for Neurology and Neurosurgery (UCLH), led by John Collinge with Simon Mead as Clinical Lead; it runs the National Prion Monitoring Cohort and treated six patients with PRN100.

Key facts

  • Longitudinal observational study of all patients diagnosed with or at high risk of human prion disease; three groups: symptomatic, asymptomatic with confirmed preclinical disease, and asymptomatic at high risk from exposure or genetic factors; informed by the National Prion Clinic and the MRC PRION-1 trial; contact John Collinge.
  • Participants are seen at the National Prion Clinic in London or by visiting study staff; travel, hotel and food costs are paid by the study; samples stored for future tests; UCL is sole data controller under UK GDPR.
  • Collinge is Director and Mead Clinical Lead; the staff page also lists an NIHR clinical lecturer and a consultant in neuropalliative care from 2026.
  • Patients with suspected prion disease are referred jointly to the surveillance unit and the clinic and were visited within 5 days of referral in the period described in 2016.
  • The clinic hosts the National Prion Monitoring Cohort, with visits at least every 12 months and travel, hotel and food costs paid for participants and up to two relatives.
  • Six patients received the antibody PRN100 at UCLH between October 2018 and July 2019.
  • After the Edinburgh surveillance unit closed in March 2025, clinical advice for suspected cases in Edinburgh services is routed to this clinic.

Timeline

  1. 2018PRN100 dosing begins.
  2. 2025Edinburgh surveillance unit closes.
  3. 2026Open Day for patients and at-risk relatives.
  4. 2026Edinburgh services page routes advice to the clinic.
Sources for this page