The Generative Brain

Brief group Acceptance and Commitment Therapy for people at risk of inherited prion disease (National Prion Clinic feasibility study, CJD Support Network grant 2023)

A UK study that tested whether a short group course of Acceptance and Commitment Therapy (ACT), a talking therapy that teaches people to live alongside uncertainty and act on their values, is workable and acceptable for adults at risk of inherited prion disease. The CJD Support Network listed it in 2023 as a research grant to Dr Edgar Chan and described it as a randomised controlled evaluation. As carried out at the National Prion Clinic in London, it was a non-randomised feasibility study with a waitlist control: one 5-hour group workshop plus an individual booster session, with 23 people completing. Results were posted as a preprint in June 2026 and published in Neurotherapeutics in September 2026. The authors present it as feasibility evidence only and call for properly powered controlled trials. This is information about a research study, not advice on treatment.

Status as of 2026-10-17. Please check the study registry for the latest position.

Key facts

  • The CJD Support Network lists a 2023 research grant to Dr Edgar Chan titled Evaluation of single-session ACT to support those living at-risk of Prion disease; no amount is published.
  • The grant description said the project would be the first to address the psychological burden of living at risk using a randomised control methodology, and that a single-session group workshop might be feasible and cost-effective.
  • The published study was in fact non-randomised: a parallel-group feasibility and acceptability trial with a waitlist control, because randomisation was judged not feasible given participant availability and individual needs.
  • Participants were asymptomatic UK adults at risk of inherited prion disease, either gene-positive or untested, with exclusions for symptoms compatible with onset, current suicidal ideation, severe mental health conditions or significant cognitive impairment.
  • Recruitment ran through the National Prion Monitoring Cohort and CJD Support Network advertising; ethics approval was an amendment to the NPMC study (reference 05/MRE/0063). The preprint names the HRA and Health and Care Research Wales as the approving bodies.
  • Of 61 people contacted, 59 were eligible, 34 consented (58 percent), 29 were assigned (15 workshop, 14 waitlist) and 23 completed the intervention.
  • The intervention was a single 5-hour face-to-face group workshop at the National Prion Clinic, London, with five workshops held, plus an individual booster that could be online or by phone and an online psychoeducation video.
  • Workshops were run by a consultant clinical neuropsychologist (Edgar Chan) and a trainee clinical psychologist (Rhianna Brien).
  • All predefined feasibility criteria were met: completion 80 percent, 3-month retention 79 percent, missing data 10 percent; participants rated the workshop useful and appropriate.
  • Psychological quality of life and behavioural awareness improved at 3 months, with larger effects in people with higher baseline depressive symptoms; outcome tools were DASS-21, CompACT and WHOQOL-BREF.
  • Interviews pointed to peer connection, experiential learning and practical ways to handle uncertainty as the valued parts.
  • Authors are from UCL clinical psychology, Baylor College of Medicine, the MRC Prion Unit at UCL, the National Prion Clinic (UCLH), the CJD Support Network and the UCL Queen Square Institute of Neurology; Edgar Chan is corresponding author and John Collinge and Simon Mead are co-authors.
  • The paper states the CJD Support Network funded delivery of the workshops, and Edgar Chan declares financial support from the charity; no grant number is given. The preprint also lists the CJD Support Network as funder.
  • The paper says the study was not prospectively registered; the preprint declaration form ticks registration as yes but gives no identifier. No ISRCTN or ClinicalTrials.gov record was found.
  • Stated limits include the small sample, no validated fidelity measure, a highly engaged research cohort, an ethnically homogeneous sample, no correction for multiple comparisons and post hoc subgroup analyses.
  • The work is also the basis of a 2025 UCL clinical psychology doctoral thesis by Rhianna Brien, which recommends moving to a randomised controlled trial (seen only as search excerpts).

Timeline

  1. 2023CJD Support Network research grant to Dr Edgar Chan for an evaluation of single-session ACT for people at risk of prion disease.
  2. 2023Edgar Chan and Rhianna Brien introduce the project at the CJD Support Network family support meeting (video linked from the grants page).
  3. 2025Rhianna Brien's UCL DClinPsy thesis on the acceptability and feasibility of the intervention.
  4. 2026Preprint posted on medRxiv.
  5. 2026Paper accepted by Neurotherapeutics (received 11 June 2026).
  6. 2026Paper published online in Neurotherapeutics 23(6), e01079, open access.
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