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Lookup NU author(s): Dr Chloe GeaganORCiD, Professor Volker StraubORCiD
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND).
© 2026 The Author(s). Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.Aim: To 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. Method: An 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. Results: The 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. Interpretation: The 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.
Author(s): Miranda R, Weerkamp PMM, Kolesnik A, Geagan C, Chieffo D, Suarez-Bagnasco M, Skuse D, Vroom E, Niks EH, Vissing J, Desguerre I, Straub V, Muntoni F, Mercuri E, Hendriksen JGM, Angeard N, Athanasiou D, Bakker S-A, Boddaert N, Drummond E, Durrlemann C, Fortunato F, Garcia-Moreno LM, Gervasi M, Govaart R, Guliaeva I, Hankinson C, Hemar L, Hendel R, Kan H, Kerkela L, Landon G, Malinova M, Mandy W, Moriconi F, Pellizzari M, Poncet S, Sakellariou E, Siminiuc S, Slipsager AW, Smythe L, Spitali P, Stemmerik MPG, Vogel A, Wolstencroft J, Zanetti C
Publication type: Article
Publication status: Published
Journal: Developmental Medicine and Child Neurology
Year: 2026
Pages: epub ahead of print
Online publication date: 14/01/2026
Acceptance date: 26/11/2025
Date deposited: 03/02/2026
ISSN (print): 0012-1622
ISSN (electronic): 1469-8749
Publisher: John Wiley and Sons Inc
URL: https://doi.org/10.1111/dmcn.70145
DOI: 10.1111/dmcn.70145
Data Access Statement: Datasets supporting the findings of this study are deposited in the Duchenne Data Repository at https://repository. duchennedatafoundation.org/dataset/deep-cognitiveand-behavioral-phenotyping-of-patients-with-dystrophin opaties and under the license CC BY-NC-ND: AttributionNonCommercial-NoDerivatives 4.0. Interested parties may request access by completing the data access form in the repository's portal. Access requests will be reviewed in accordance with the repository's data sharing policies and the terms of the license.
PubMed id: 41531237
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