ArticleNIHR open research2026
Improving Measurement and Priorities for Assessment in Clinical Trials of childhood-onset Dystonia International Core Outcome Set (Dystonia IMPACT-COS): A protocol.
Article in NIHR open research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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.
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.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
26 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Introduction: Dystonia is a movement disorder characterised by abnormal movements and/or postures, initiated or worsened by voluntary action. Non-degenerative childhood dystonia is common, represents a substantial source of lifelong disability, and is often associated with other motor and non-motor phenotypes that can contribute to functional impairments. However, there is no consensus on how to measure motor and non-motor outcomes associated with dystonia, nor is there consensus on what outcomes to measure. This prevents adequate evaluation and development of evidence-based interventions and decision-making in clinical practice. Here, we present the protocol for establishing global expert consensus on the Dystonia Impact Core Outcome Set (DI-COS) to describe what dystonia-associated outcomes to measure and how to measure them. Methods and analysis: The DI-COS study includes a mixed-methods programme with three phases. Phase 1 includes; (i) scoping review, (ii) qualitative interview study with children and families, and (iii) international survey of health, social care, and education-based professionals. Phase 2 is a three round international e-Delphi study informed by Phase 1, and expert consensus from: (i) a professional panel and (ii) experts with lived experience (parents and children). Content and thematic analysis, and descriptive statistics will be used to analyse qualitative and quantitative data, respectively. Results will be triangulated to inform development of the Delphi survey in Phase 2. Phase 3 will identify the outcome measures available and recommend assessment outcomes agreed as part of Phase 2 Consensus. Ethics and dissemination: Ethical approval has been obtained from Camden and King's Cross Research Ethics Committee (25/LO/0150) and Queen Mary, University of London Research Ethics Committee. All dissemination activities (including papers submitted to peer-reviewed journals, abstracts submitted to national/international conferences, visual outputs and engagement events), will be co-produced, co-designed and co-presented/authored with members of the study's advisory groups and shared via project's networks.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.