At the Duchenne Care Conference 2024, Dr. Jos Hendriksen from Kempenhaeghe presented the BIND project. Dr. Hendriksen, a clinical psychologist and neuropsychologist at the Kempenhaeghe Center for Neurological Learning Disorders in Heeze, and Maastricht University in The Netherlands, explained the project’s main goals and their approach to achieving them.

His presentation included the work done in an EU funded study on Brain Involvement in Dystrophinopathies (BIND) in seven EU centers for neuromuscular disorders.

To help professionals and clinicians in early detection of these brain related comorbidities, several questionnaires were developed and used in the BIND study. These questionnaires help to understand the behavioral challenges faced by patients. Additionally, the BIND screener is presented. This is a quick, easy to complete and reliable tool for screening and identifying neurocognitive and neuropsychiatric problems. Data and results of this study will be published in the near future.

Dr. Hendriksen and his team are involved in WP5 (Work Package 5) of BIND: Deep Functional Phenotyping of Duchenne Muscular Dystrophy and Becker Muscular Dystrophy Patients. They have recently completed assessment of a large cohort of patients with DMD and BMD from six European countries. These patients were selected based on their genomic deletions and the expected outcome of their mutations for brain dystrophin production. Neurocognitive and neuropsychiatric comorbidities were assessed.

 The Duchenne Care Conference is an annual online event organized by the World Duchenne Organization. It is aimed at healthcare professionals. The goal is to keep everyone involved in the care of Duchenne and Becker MD up to date with the latest developments. The conference brings together various stakeholders to present and discuss the latest updates in treatment and care. The program and speakers are guided by the board of the World Duchenne Organization and the Advisory Board of the Accredited Duchenne Centers Program.