News & Events
News
Launch of the BIND Association
The BIND Association brings together researchers, clinicians, and partners committed to improving outcomes for individuals with dystrophinopathies. Explore our latest updates on new initiatives, events, and collaborative efforts shaping the future of this global scientific community.
The unmet need of psychopharmacological intervention for neuropsychiatric and neurodevelopmental comorbidities in Duchenne muscular dystrophy: report of 5 workshops
Francesco Muntoni, Liesbeth De Waele, Francina Munell, Ulrike Schara-Schmidt, Eugenio Mercuri. Jos Hendriksen, The BIND WP5 working group, The DMD Psychopharmaca working group European Journal of Paediatric Neurology. 2026 Volume 61, Pages 84-89...
The BIND Bulletin
The BIND Association brings together researchers, clinicians, and partners committed to improving outcomes for individuals with dystrophinopathies. Explore our latest updates on new initiatives, events, and collaborative efforts shaping the future of this global scientific community.
Professor Francesco Muntoni Awarded the 2026 Novo Nordisk Prize
The BIND Association brings together researchers, clinicians, and partners committed to improving outcomes for individuals with dystrophinopathies. Explore our latest updates on new initiatives, events, and collaborative efforts shaping the future of this global scientific community.
Hyperactivity, compulsive-like behaviours, and impaired flexibility in mouse models of Duchenne muscular dystrophy
Faouzi Zarrouki, Léa Ceschi, Rubén Miranda, Amel Saoudi, Cyrille Vaillend. Neurobiology of Disease, Volume 219, 2026, https://www.sciencedirect.com/science/article/pii/S0969996126000094 Duchenne muscular dystrophy (DMD) is caused by changes in the dystrophin gene and...
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, Isabelle Desguerre, Volker Straub, Francesco Muntoni, Eugenio Mercuri, Jos G. M. Hendriksen, on behalf...
The BIND Bulletin
The BIND Association brings together researchers, clinicians, and partners committed to improving outcomes for individuals with dystrophinopathies. Explore our latest updates on new initiatives, events, and collaborative efforts shaping the future of this global scientific community.
Ineffective behavioral rescue despite partial brain Dp427 restoration by AAV9-U7-mediated exon 51 skipping in mdx52 mice
Ophélie Vacca, Amel Saoudi, Mathilde Doisy, Xaysongkhame Phongsavanh, Olivier Le Coz, Cathy Nagy, Julia Kuzniar, Cyrille Vaillend, Aurélie Goyenvalle. Molecular Therapy Nucleic Acids Volume 36, Issue 4, 2025 https://doi.org/10.1016/j.omtn.2025.102779 Duchenne...
Beyond muscle: Delivering RNA therapeutics to the CNS in Duchenne muscular dystrophy
Ophélie Vacca, Cathy Nagy, Aurélie Goyenvalle. Beyond Muscle: Delivering RNA therapeutics to the CNS in Duchenne Muscular Dystrophy. Journal of neuromuscular diseases. 2025 https://doi.org/10.1177/22143602251360668 Duchenne muscular dystrophy (DMD) is a genetic...
Regional expression of dystrophin-gene transcripts and proteins in the mouse brain
Konstantina Tetorou, Artadokht Aghaeipour, Shunyi Ma, Talia Gileadi, Amel Saoudi, Pablo Perdomo Quinteiro, Jorge Aragon, Maaike van Putten, Pietro Spitali, Cecilia Montanez, Cyrille Vaillend, Jennifer Elizabeth Morgan, Federica Montanaro, Francesco Muntoni. Regional...
Influence of Dystrophin Isoform Deficiency on Motor Development in Duchenne Muscular Dystrophy
Mary Chesshyre, Deborah Ridout, Georgia Stimpson, Laurent Servais, Giovanni Baranello, Adndn Manzur, UK NorthStar Clinical Network, Francesco Muntoni. Influence of Dystrophin Isoform Deficiency on Motor Development in Duchenne Muscular Dystrophy. Annals of Clinical...
The role of dystrophin isoforms and interactors in the brain
Konstantina Tetorou, Artadokht Aghaeipour, Simran Singh, Jennifer E Morgan, Francesco Muntoni. The role of dystrophin isoforms and interactions in the brain. Brain. 2025, Volume 148, Issue 4, Pages 1081–1098...
Case Report: Home initiation of nocturnal non-invasive ventilation in two adolescents with Duchenne muscular dystrophy and comorbid autism spectrum disorder and ADHD
Pien Weerkamp, Mark Voermans, Moniek Finders, Arno Brouwers, Phillipe Collins, Sylvia Klinkenburg, Jos Hendriksen. Case Report: Home initiation of nocturnal non-invasive ventilation in two adolescents with Duchenne muscular dystrophy and comorbid autism spectrum...
Towards harmonization of clinical tools for assessing Brain Involvement in Dystrophinopathies (BIND); report of four expert workshops: Newcastle, Leiden, Rome, Paris
Jos Hendriksen, Pien Weerkamp, Ruben Miranda, Anna Kolesnik, Daniela Chieffo, David Skuse, Elizabeth Vroom, Chloe Reagan, Francesco Muntoni, Eugenio Mercuri, on behalf of the BIND WP5 working group. Towards harmonization of clinical tools for assessing Brain...
The behavioural consequences of dystrophinopathy
Minou A T Verhaeg, Elizabeth M van Der Pijl, Davy can de Vijver, Christa L Tanganyika-de Winter, Tiberiu L Stan, Angel van Uffelen, Luciano Censoni, Maaike can Putten. The behavioural consequences of dystrophinopathy. Disease Models & Mechanisms. 2025, 18 (2)....
Impact of distinct dystrophin gene mutations on behavioral phenotypes of Duchenne muscular dystrophy
Amel Saoudi, Manuela D. Mitsogiannis, Faouzi Zarrouki, Claire Fergus, Erwina Stoke, Silvia Talavera, Dervla Moore-Frederick, Vincent P Kelly, Aurélie Goyenvalle, Federica Montanaro, Francesco Muntoni, Jack A Prenderville, Ewa Sokolowska, Cyrille Vaillend. Impact of...
Duchenne muscular dystrophy: recent insights in brain related comorbidities
Cyrille Vaillend, Yoshitsugu Aoki, Eugenio Mercuri, Jos Hendriksen, Konstantina Tetorou, Aurélie Goyenvalle, Francesco Muntoni. Duchenne Muscular Dystrophy: Recent insights in brain related comorbidities. Nature Communications. 2025, Volume 16, Article 1298....
Social and emotional alterations in mice lacking the short dystrophin-gene product, Dp71
Rubén Miranda, Léa Ceschi, Delphine Le Verger, Flora Nagapin, Jean-Marc Edeline, Rémi Chaussenot, Cyrille Vaillend. Social and emotional alterations in mice lacking the short dystrophin gene product, Dp71. Behavioral and Brain Functions. 2024, Volume 20, Article 21....
Recording: Understanding the role of dystrophin in the brain
This BIND Webinar, taking place on Monday, September 23 at 18:00 CEST, aims to share the insights and lessons learnt of the BIND project.
BIND Project secures funding to continue genotype phenotype correlation of the DMD and BMD brain
At the Annual Conference of Duchenne Parent Project Spain, BIND participated in a session titled “Cognitive Part in DMD/BMD: Project BIND.”
BIND Patient Community Webinar: Understanding the Role of Dystrophin in the Brain
This BIND Webinar, taking place on Monday, September 23 at 18:00 CEST, aims to share the insights and lessons learnt of the BIND project.
Summary of BIND presentation at Duchenne Parent Project Spain 2024 Conference
At the Annual Conference of Duchenne Parent Project Spain, BIND participated in a session titled “Cognitive Part in DMD/BMD: Project BIND.”
Action Duchenne spring webinar on the BIND project a great success
The Spring Webinar from Action Duchenne, where the BIND project was presented, is well received by the patient community.
BIND project presented at Duchenne Care Conference 2024
Dr Jos Hendriksen (Kempenhaeghe) presented the BIND project, in particular the BIND screener, at Duchenne Care Conference 2024.
AAV-Mediated Restoration of Dystrophin-Dp71 in the Brain of Dp71-Null Mice: Molecular, Cellular and Behavioral Outcomes
Vacca, O.; Zarrouki, F.; Izabelle, C.; Belmaati Cherkaoui, M.; Rendon, A.; Dalkara, D.; Vaillend, C. AAV-Mediated Restoration of Dystrophin-Dp71 in the Brain of Dp71-Null Mice: Molecular, Cellular and Behavioral Outcomes. Cells 2024, 13, 718....
Action Duchenne Spring Webinar on the BIND Project
Action Duchenne hosts a Spring Webinar to learn about the BIND project, focusing on learning and behaviour challenges in DMD/BMD.
BIND Project Presented at Duchenne Parent Project Spain Annual Conference
BIND was presented at the Duchenne Parent Project Spain’s annual conference. Dr. De Miranda presented cognitive aspects of DMD/BMD.
The unconditioned fear response in vertebrates deficient in dystrophin
S. Gharibi, C. Vaillend, A. LindsayProgress in Neurobiology, Volume 235, 2024, 102590, ISSN 0301-0082https://doi.org/10.1016/j.pneurobio.2024.102590 The review paper titled "The Unconditioned Fear Response in Vertebrates Deficient in Dystrophin," published in Progress...
FAIRification and semantic modelling for Duchenne and Becker Muscular Dystrophy rare diseases
Pablo Perdomo-Quinteiro, Sergiu Siminiuc, Paraskevi Sakellariou, Marco Roos, Pietro Spitali, Núria Queralt-Rosinach The poster presented at the SWAT4HCLS International Conference 2023 [1] discusses ongoing FAIRification efforts within the BIND project to enhance the...
Understanding anxiety experienced by young males with Duchenne muscular dystrophy: a qualitative focus group study
Rachel E. Trimmer, William P.L. Mandy, Francesco Muntoni, Kate E. Maresh. https://doi.org/10.1016/j.nmd.2023.12.002 This study looked at anxiety in young boys with Duchenne muscular dystrophy (DMD) and how it affects them, from their perspectives and those of their...
Networking to Optimize Dmd exon 53 Skipping in the Brain of mdx52 Mouse Model
Doisy, Mathilde et al. Biomedicines vol. 11,12 3243. 7 Dec. 2023, doi:10.3390/biomedicines11123243 The study titled 'Networking to Optimize Dmd exon 53 Skipping in the Brain of mdx52 Mouse Model,' published in the journal Biomedicines, looks at new treatments for...
BIND at Duchenne Patient Academy 2023
At the Duchenne Patient Academy in Athens on December 1, 2023, Dimitrios Athanasiou (WDO) presented the BIND project.
Dissemination, Knowledge Management and Exploitation
An end-of-year update from Paraskevi Sakellariou and Sergiu Siminiuc (DDF) and the team on the work performed in the BIND Project – Work Package 8.
Structural integrity in the DMD and BMD brain and in dystrophic mdx mice
An end-of-year update from Leevi Kerkela (UCL) and the team on the work performed in the BIND Project – Work Package 6.
Participate in the BIND Questionnaire: Your Insights Matter
With the BIND project, an international consortium is working to find out how common and how serious brain-related issues are in Duchenne and Becker Muscular Dystrophy. As a part of this research, we are conducting a BIND questionnaire to gather information that will...
Data Integration
An end-of-year update from Pietro Spitali (LUMC) and the team on the work performed in the BIND Project – Work Package 7.
Deep functional phenotyping of Duchenne muscular dystrophy and Becker muscular dystrophy patients
An end-of-year update from Eugenio Mercuri (UCSC) and Jos Hendriksen (KEMP) and their teams on the work performed in the BIND Project – Work Package 5.
Impact of brain dystrophins restoration on dystrophic mice phenotype
An end-of-year update from Aurelie Goyenvalle (UVSQ) and the team on the work performed in the BIND Project – Work Package 4.
Behavioural and neuropsychological phenotyping of dystrophic mouse models lacking different brain isoforms
An end-of-year update from Cyrille Vaillend (CNRS) and the team on the work performed in the BIND Project – Work Package 3.
Localisation and interactome analysis of dystrophin isoforms in the mouse and human brain
An end-of-year update from Jennifer Morgan (UCL) and her team on the work performed in the BIND Project – Work Package 2.
Psychological test usage in Duchenne muscular dystrophy: An EU multi-centre study
Pien Weerkamp, Daniela Chieffo, Philippe Collin, Federica Moriconi, Andriani Papageorgiou, Isabella Vainieri, Ruben Miranda, Catherine Hankinson, Asmus Vogel, Sarah Poncet, Catherine Moss, Francesco Muntoni, Eugenio Mercuri, Jos Hendriksen DOI...
Wechsler Scale Intelligence Testing in Males with Dystrophinopathies: A Review and Meta-Analysis
Emotional behavior and brain anatomy of the mdx52 mouse model of Duchenne muscular dystrophy
Psychosocial adjustment in adults with Duchenne muscular dystrophy: A pilot study on a shortened parent-report questionnaire
Emotional behavior and brain anatomy of the mdx52 mouse model of Duchenne muscular dystrophy
Promote Sharing of DMD Brain Data to Enhance Research: DDF & EBRAINS Collaboration
Promote Sharing of DMD Brain Data to Enhance Research: DDF & EBRAINS Collaboration Veenendaal, May 25 2023 – The Duchenne Data Foundation (DDF) and EBRAINS are delighted to announce their collaboration and coordinated efforts to support data sharing related to...
Emotional behavior and brain anatomy of the mdx52 mouse model of Duchenne muscular dystrophy
Emotional behavior and brain anatomy of the mdx52 mouse model of Duchenne muscular dystrophy
Improved reproducibility of diffusion kurtosis imaging using regularized non-linear optimization informed by artificial neural networks
Improved reproducibility of diffusion kurtosis imaging using regularized non-linear optimization informed by artificial neural networks
Abnormal Expression of Synaptic and Extrasynaptic GABAA Receptor Subunits in the Dystrophin-Deficient mdx Mouse
Abnormal Expression of Synaptic and Extrasynaptic GABAA Receptor Subunits in the Dystrophin-Deficient mdx Mouse
Partial Restoration of Brain Dystrophin and Behavioral Deficits by Exon Skipping in the Muscular Dystrophy X-Linked (mdx) Mouse
Partial Restoration of Brain Dystrophin and Behavioral Deficits by Exon Skipping in the Muscular Dystrophy X-Linked (mdx) Mouse
Partial restoration of brain dystrophin by tricyclo-DNA antisense oligonucleotides alleviates emotional deficits in mdx52 mice
Partial Restoration of Brain Dystrophin and Behavioral Deficits by Exon Skipping in the Muscular Dystrophy X-Linked (mdx) Mouse
Investigating the Impact of Delivery Routes for Exon Skipping Therapies in the CNS of DMD Mouse Models
Partial Restoration of Brain Dystrophin and Behavioral Deficits by Exon Skipping in the Muscular Dystrophy X-Linked (mdx) Mouse
Development of a novel startle response task in Duchenne muscular dystrophy
Maresh, K., Papageorgiou, A., Ridout, D., Harrison, N. A., Mandy, W., Skuse, D., & Muntoni, F. (2023). Brain: a journal of neurology, 146(1), 252–265. https://doi.org/10.1093/brain/awac048 Duchenne muscular dystrophy (DMD) is a genetic disorder that primarily...
BIND Project 2022 overview
The BIND Project 2022 overview includes an update on the research and developments made in understanding the role of dystrophin in the brain.
Webinar: Información del Estudio BIND para Familias en España
Un webinar para familias en España que quieran participar en el estudio BIND sobre retos de aprendizaje y comportamiento en las DMD y DMB.
Webinar: BIND Studie informatie voor families in Nederland
Een webinar voor gezinnen in Nederland die mee willen doen aan het BIND-onderzoek naar leer- en gedragsuitdagingen in Duchenne en Becker.
Webinar: BIND Study information for UK Families
A BIND webinar for families in the UK who are interested in joining the study in learning and behaviour challenges in Duchenne and Becker MD.
Partial Restoration of Brain Dystrophin and Behavioral Deficits by Exon Skipping in the Muscular Dystrophy X-Linked (mdx) Mouse
Partial Restoration of Brain Dystrophin and Behavioral Deficits by Exon Skipping in the Muscular Dystrophy X-Linked (mdx) Mouse
Brain Dp140 alters glutamatergic transmission and social behaviour in the mdx52 mouse model of Duchenne muscular dystrophy
Brain Dp140 alters glutamatergic transmission and social behaviour in the mdx52 mouse model of Duchenne muscular dystrophy
Startle responses in Duchenne muscular dystrophy: a novel biomarker of brain dystrophin deficiency
New BIND Publication: Startle responses in Duchenne muscular dystrophy: a novel biomarker of brain dystrophin deficiency.
BIND Study information for potential participants
The BIND study aims to better understand how DMD/BMD impacts learning and behavioural challenges.
Investigating the role of dystrophin isoform deficiency in motor function in Duchenne muscular dystrophy
New BIND Publication: Investigating the role of dystrophin isoform deficiency in motor function in Duchenne muscular dystrophy.
BIND researchers provide a model for studying learning and behaviour challenges in Duchenne MD
BIND researchers provide a model for studying learning and behaviour challenges that occur in people living with Duchenne muscular dystrophy
BIND study sites now recruiting in United Kingdom
Both UCL and Newcastle are now recruiting boys to learn more about learning and behavioural challenges in Duchenne and Becker MD.
UCM BIND post-doctoral position
The BIND project offers a two-year postdoctoral position, starting from September 2021, under the supervision of Ruben Miranda and Luis M García-Moreno from the Psychobiology and Methodology in Behavioral Sciences Department at the Complutense University of Madrid...
España es la primera en abrir un estudio para investigar la DMD / DMB y la salud mental
España está actualmente reclutando participantes varones de entre 5 y 50 años para tomar parte en un estudio online centrado en investigar cómo afectan la DMD y DMB a la salud mental y cómo poder valorar su impacto.
UCL BIND post-doctoral position
Research Fellow job position, PhD degree in neuroscience or a relevant subject
BIND supports World Duchenne Awareness Day in research on brain involvement in DMD/BMD
The BIND (Brain Involvement iN Dystrophinopathies) project is the first project of this scale to improve characterisation of brain involvement in Duchenne and Becker Muscular Dystrophy (DMD and BMD respectively), a previously overlooked field. Launched this January,...
Large international project to study dystrophin in the brain in Duchenne and Becker muscular dystrophy launched
The BIND project is the first project of this scale to improve characterisation of brain involvement in Duchenne and Becker Muscular Dystrophy (DMD and BMD respectively), a previously overlooked field. This EU-funded project connecting 19 partners aims to address a...
Events
Upcoming Events
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Past Events
This webinar aims to share the insights and lessons learnt of the BIND project. The BIND project focuses on understanding the role of dystrophin in the brain. It aims to tackle brain comorbidities (learning difficulties and behavioural challenges) faced by people living with Duchenne and Becker muscular dystrophy (DMD and BMD).
The webinar will delve into the critical topic of how Duchenne and Becker Muscular Dystrophies impact learning and behaviour. Attendees will gain valuable insights from leading experts in the field, including Professor Francesco Muntoni, Dr Jos Hendriksen, Dr Ruben Miranda Garcia, and Dr Anna Kolesnik. They will discuss their findings and the implications of the BIND project on improving the quality of life of people living with DMD/BMD and having brain comorbidities.
The Brain Innovation Days bring the brain ecosystem together to foster dialogue, exchange knowledge, accelerate investment in research & innovation and facilitate business development.
