The Generative Brain

National Prion Monitoring Cohort (UK; IRAS 345370)

UK National Prion Monitoring Cohort at the National Prion Clinic in London: a long-running cohort of patients with, or at high risk of, human prion disease, in three groups, with visits every 6 to 12 months, stored blood and travel costs covered. It also served as the comparison group for the PRN100 patients.

Status as of 2026-10-16. Please check the study registry for the latest position.

Key facts

  • Status: Active (information sheets dated July 2026).
  • Symptomatic: yes
  • Carrier without symptoms: yes (asymptomatic at high risk from genetic factors or exposure)
  • Untested at risk: to verify
  • Where: United Kingdom: National Prion Clinic, London (UCL, MRC Prion Unit). Whether people outside the UK can join is not stated.
  • Rules: Patients diagnosed with or at high risk of human prion disease; three groups (symptomatic, asymptomatic with confirmed preclinical disease, asymptomatic high risk).
  • What it asks of participants: Clinic visits with samples stored for future tests; study pays travel, hotel and food; UCL is the data controller.
  • Remote participation: partly (staff can visit participants who prefer to be seen locally)
  • Contact route: Contact is the cohort lead, John Collinge (HRA summary).
  • The ethics opinion is dated 4 September 2024 (REC 24/LO/0510) with a planned UK duration of about 19 years and 5 months; the HRA page gives no recruitment status.
  • The third group is people at high risk from known exposure or genetic factors; a second group covers asymptomatic people with confirmed preclinical infection or disease.
  • At-risk participants are seen at least every 12 months and at most every 6, give a 50 ml blood sample with part stored for future prion tests, and may have optional recorded neurological exams, MRI, EEG, EMG and nerve conduction.
  • For London visits the study pays travel, a shared hotel room and necessary food for the participant and up to two relatives; UCL is sole data controller and no DNA testing is done on the study blood sample.
  • The information sheet names Simon Mead as Clinical Lead and John Collinge as Director of the MRC Prion Unit and points questions to the clinic help line and a shared clinic email.
  • The cohort has followed patients since 2008 and was the comparator for six PRN100-treated patients.

Timeline

  1. 2008Cohort begins.
  2. 2022Cohort used as comparator in the PRN100 report.
  3. 2024Favourable ethics opinion.
  4. 2026At-risk information sheet version 4.3 current.
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