Evidence map›Paper›PMID 41531237›Full record

Observational studyDevelopmental medicine and child neurology2026

Screening for brain-related comorbidities in Duchenne muscular dystrophy: Construction, reliability, and validity of the BIND screener.

Ruben Miranda, Pien M M Weerkamp, Anna Kolesnik, Chloe Geagan, Daniela Chieffo, Mariana Suárez-Bagnasco, David Skuse, Elizabeth Vroom, Erik H Niks, John Vissing and 6 more

Abstract readObservational Study
In one paragraph

Observational study in Developmental medicine and child neurology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Observational
  2. Article
  3. 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

16 authors.

Ruben MirandaDepartment of Psychobiology and Methodology in Behavioral Sciences, Universidad Complutense de Madrid, Madrid, Spain.
Pien M M WeerkampKempenhaeghe Centre for Neurological Learning Disabilities, Heeze, Netherlands.
Anna KolesnikDubowitz Neuromuscular Centre, Great Ormond Street Institute of Child Health, UCL and NIHR Biomedical Research Centre, London, UK.
Chloe GeaganJohn Walton Muscular Dystrophy Research Centre, NIHR Newcastle Biomedical Research Centre, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.
Daniela ChieffoDepartment of Paediatric Neurology, Catholic University, Rome, Italy.
Mariana Suárez-BagnascoDepartment of Psychobiology and Methodology in Behavioral Sciences, Universidad Complutense de Madrid, Madrid, Spain.
David SkuseDubowitz Neuromuscular Centre, Great Ormond Street Institute of Child Health, UCL and NIHR Biomedical Research Centre, London, UK.
Elizabeth VroomWorld Duchenne Organization, Veenendaal, Netherlands.
Erik H NiksLeiden University Medical Center, Department of Neurology, Leiden, Netherlands.
John VissingCopenhagen Neuromuscular Center, Department of Neurology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.
Isabelle DesguerreImagine Institute of Genetic Diseases, Necker-Enfants Malades Hospital, Paris, France.
Volker StraubJohn Walton Muscular Dystrophy Research Centre, NIHR Newcastle Biomedical Research Centre, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.
Francesco MuntoniDubowitz Neuromuscular Centre, Great Ormond Street Institute of Child Health, UCL and NIHR Biomedical Research Centre, London, UK.
Eugenio MercuriDepartment of Paediatric Neurology, Catholic University, Rome, Italy.
Jos G M HendriksenKempenhaeghe Centre for Neurological Learning Disabilities, Heeze, Netherlands.
BIND Consortium

Funding

Duchenne Parent Project 24.003Duchenne Parent Project DUK-2024-06European Commission 847826Parent Project Muscular Dystrophy 24MG-PG12
6 · The paper itself

Abstract

aimTo develop a brief, reliable, and valid screening tool and to provide normative data for the identification of individuals with Duchenne muscular dystrophy (DMD) at risk of brain-related comorbidities.

methodAn 18-item proxy/self-report screening tool covering nine comorbidity areas was developed on the basis of existing literature and expert consensus, and translated into 11 languages. In this cross-sectional observational study, data from 835 individuals with DMD (aged 5-42 years) were used to assess reliability, construct validity, and diagnostic accuracy. A subsample of 90 participants completed cognitive and behavioural assessments for concurrent validity analyses.

resultsThe Brain Involvement iN Dystrophinopathies (BIND) screener showed excellent internal consistency (α = 0.89) and a factor structure aligned with theoretical domains. Age-related patterns were observed across domains. The total score (Duchenne Brain Comorbidity Score) correlated with clinical and cognitive markers in the validation subsample. Receiver operating characteristic analysis in the full sample yielded an area under the curve of 0.78, with a cut-off score of 20/72 providing optimal sensitivity (71.6%) and specificity (72.5%) for identifying parent- or self-reported neurodevelopmental conditions previously diagnosed by professionals.

interpretationThe BIND screener is a brief, psychometrically robust tool that facilitates early identification of brain-related comorbidities in DMD and may be applied in both clinical practice and research.

Indexed as

Brain DiseasesMuscular Dystrophy, DuchenneAdolescentAdultChildChild, PreschoolComorbidityCross-Sectional StudiesFemaleHumansMalePsychometricsReproducibility of ResultsYoung Adult

Identifiers

PMID41531237
PMCPMC13340617

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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.