Evidence map›Paper›PMID 37555494›Full record

ReviewMultiple sclerosis (Houndmills, Basingstoke, England)2023

Enhancing involvement of people with multiple sclerosis in clinical trial design.

Emma Gray, Anneesa Amjad, Jenny Robertson, Judy Beveridge, Susan Scott, Guy Peryer, Marie Braisher, Cheryl Pugh, Sara Peres, Ruth Ann Marrie and 2 more

Open access · hybridAbstract readReview
In one paragraph

Review in Multiple sclerosis (Houndmills, Basingstoke, England), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
5.2field-weighted citation impact, top 4% of its field
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

6 citing papers in PubMed, 12 citations in OpenAlex.

  1. Article
  2. Review
  3. Article
  4. The refined Pathways to Cures Research Roadmap for multiple sclerosis cures.Multiple sclerosis (Houndmills, Basingstoke, England) · 2024
    Article
  5. Article
  6. Review
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

12 authors at 6 institutions in 4 countries.

Emma GrayDepartment of Research, MS Society UK, London, UK.
Anneesa AmjadDepartment of Research, MS Society UK, London, UK.
Jenny RobertsonDepartment of Research, MS Society UK, London, UK.ORCID 0000-0003-3271-7885
Judy BeveridgeResearch Network, MS Society UK, London, UK.
Susan ScottResearch Network, MS Society UK, London, UK.
Guy PeryerResearch Network, MS Society UK, London, UK/ Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, UK.
Marie BraisherQueen Square Multiple Sclerosis Centre, Department of Neuroinflammation, UCL Queen Square Institute of Neurology, Faculty of Brain Sciences, University College London, London, UK.ORCID 0000-0003-0634-8350
Cheryl PughNational Institute for Health Research, Biomedical Research Centre, University College London Hospitals, London, UK.ORCID 0000-0003-4584-9780
Sara PeresNational Institute for Health Research, Biomedical Research Centre, University College London Hospitals, London, UK.
Ruth Ann MarrieDepartments of Internal Medicine and Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.ORCID 0000-0002-1855-5595
Maria Pia SormaniBiostatistics Unit, Department of Health Sciences, University of Genoa, Genoa, Italy/IRCCS Ospedale Policlinico San Martino, Genoa, Italy.ORCID 0000-0001-6892-104X
Jeremy ChatawayQueen Square Multiple Sclerosis Centre, Department of Neuroinflammation, UCL Queen Square Institute of Neurology, Faculty of Brain Sciences, University College London, London, UK/National Institute for Health Research, Biomedical Research Centre, University College London Hospitals, London, UK/Medical Research Council Clinical Trials Unit at UCL, Institute of Clinical Trials and Methodology, University College London, London, UK.
Multiple Sclerosis Society · GBNational Institute for Health Research · GBOspedale Policlinico San Martino · ITQueen Mary University of London · GBUniversity of East Anglia · GBUniversity of Manitoba · CA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAlthough often overlooked, patient and public involvement (PPI) is vital when considering the design and delivery of complex and adaptive clinical trial designs for chronic health conditions such as multiple sclerosis (MS).

methodsWe conducted a rapid review to assess current status of PPI in the design and conduct of clinical trials in MS over the last 5 years. We provide a case study describing PPI in the development of a platform clinical trial in progressive MS.

resultsWe identified only eight unique clinical trials that described PPI as part of articles or protocols; nearly, all were linked with funders who encourage or mandate PPI in health research. The OCTOPUS trial was co-designed with people affected by MS. They were central to every aspect from forming part of a governance group shaping the direction and strategy, to the working groups for treatment selection, trial design and delivery. They led the PPI strategy which enabled a more accessible, acceptable and inclusive design.

conclusionActive, meaningful PPI in clinical trial design increases the quality and relevance of studies and the likelihood of impact for the patient community. We offer recommendations for enhancing PPI in future MS clinical trials.

Indexed as

Multiple SclerosisMultiple Sclerosis, Chronic ProgressiveAdaptive Clinical Trials as TopicClinical Trials as TopicHumansPatient ParticipationPatient Selectionclinical trialsengagementinvolvementMultiple sclerosispatient and public involvement

Identifiers

PMID37555494
PMCPMC10413782
OpenAlexW4385684499

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

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.