Evidence map›Paper›PMID 42472622›Full record

ReviewAge and ageing2026

Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders.

Melissa Ng, Anna Grundy, Brian Appleby, Terri Awe, Matthew Carey, Edgar Chan, Chloe Chin, Ruth Diver, Peter Hermann, Alexsandra Kovacevich and 25 more

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Age and ageing, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

35 authors.

Melissa NgNational Prion Clinic, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London, UK.ORCID 0000-0001-5255-8565
Anna GrundyDepartment of Palliative Care, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK.
Brian ApplebyNational Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH, USA.
Terri AweNational CJD NHS Nursing Service, NHS Lothian, Edinburgh, UK.
Matthew CareyDepartment of Palliative Care, Oxford University Hospitals NHS Foundation Trust, Oxford, UK.
Edgar ChanDepartment of Neuropsychology, National Hospital for Neurology and Neurosurgery, London, UK.
Chloe ChinDepartment of Palliative Care, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
Ruth DiverDepartment of Palliative Care, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
Peter HermannNational Reference Center for Surveillance of TSE, University Medical Center Göttingen, Göttingen, Germany.
Alexsandra KovacevichDepartment of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, OH, USA.
Nuriye KupeliMarie Curie Palliative Care Research Department, University College London, London, UK.ORCID 0000-0001-6511-412X
Ann Rochelle MarasiganNational Prion Clinic, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London, UK.
Beth MarshCJD Support Network, Chester, UK.
Jonathan MartinDepartment of Palliative Care, National Hospital for Neurology and Neurosurgery, London, UK.
Kosuke MatsuzonoMRC Prion Unit at UCL, Institute of Prion Diseases, London, UK.
Eugene Ace McDermottSalisbury NHS Foundation Trust, Salisbury, UK.ORCID 0000-0003-1333-2154
Kirsty McNivenNational Prion Clinic, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London, UK.ORCID 0000-0002-7525-2478
Mary MillerDepartment of Palliative Care, Oxford University Hospitals NHS Foundation Trust, Oxford, UK.
Lucy PauliDepartment of Psychiatry, Rotherham Doncaster and South Humber NHS Foundation Trust, Doncaster, UK.
Rachel QuibellDepartment of Palliative Care, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK.
Diane RitchieCentre for Clinical Brain Sciences, University of Edinburgh Division of Clinical and Surgical Sciences, Edinburgh, UK.
Alex Ruck Keene39 Essex Chambers, London, UK.ORCID 0000-0001-8856-8132
Elizabeth L SampsonMarie Curie Palliative Care Research Department, University College London, London, UK.ORCID 0000-0001-8929-7362
George TurnerMarie Curie Palliative Care Research Department, University College London, London, UK.
Rachel WilliamsNational Prion Clinic, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London, UK.
Masahito YamadaDepartment of Neurology, Kudanzaka Hospital, Tokyo, Japan.
Inga ZerrDepartment of Neuropsychology, National Hospital for Neurology and Neurosurgery, London, UK.
Tomasz BajorekNeuropsychiatry, Oxford University Hospitals NHS Foundation Trust, Oxford, UK.
Kristiam Doughty Herrera-CarrascoMarie Curie Palliative Care Research Department, University College London, London, UK.ORCID 0009-0001-5443-4985
James KennardBanbury Cross Health Centre, Banbury, UK.
Veronica O'DonnellNational Prion Clinic, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London, UK.
Richard KnightNational CJD Diagnostic and Advisory Service, Edinburgh, UK.
John CollingeNational Prion Clinic, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London, UK.
Simon MeadNational Prion Clinic, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London, UK.
Victoria BradleyDepartment of Palliative Care, Oxford University Hospitals NHS Foundation Trust, Oxford, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Prion diseases, of which Creutzfeldt-Jakob disease is the most common, are fatal neurodegenerative disorders and are often rapidly progressive. They are associated with a significant palliative care burden for patients and families, ranging from prognostic uncertainty to complex symptom management to caregiver distress. Healthcare professionals face unique pressures when caring for these patients, which can include a lack of familiarity with this rare diagnosis and rapidly evolving symptom needs due to accelerated clinical deterioration. We convened a multidisciplinary panel of experts from around the UK, including palliative care doctors, general practitioners, physician and nurse specialists in prion diseases, and a lived experience representative to compile practical, consensus-based recommendations for managing prion diseases, much of which can also be applied to other rapidly progressive dementias. In this article, we examine the available evidence base for managing various aspects of prion diseases. Where evidence is limited, we suggest best practices informed by decades of our collective experiences.

Indexed as

Creutzfeldt-Jakob SyndromePalliative CarePatient Care TeamConsensusDisease ProgressionHumansInterdisciplinary CommunicationCreutzfeldt-Jakob diseaseolder peopleprion diseaserapidly progressive dementia

Identifiers

PMID42472622
PMCPMC13381037

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.