Bind Screener

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

Living with Duchenne muscular dystrophy (DMD) ofteninvolves non-motor difficulties. Many children, adolescents,and adults also experience challenges related to attention,learning, memory, emotions, or behaviour. These difficul-ties may impact school performance, social relationships,and family life. Parents frequently report that these issuescan be as worrying (or even more so) than physical symp-toms. However, they are often identified late or not assessedat all.

The Brain Involvement iN Dystrophinopathies (BIND)screener is a short questionnaire designed to help familiesand healthcare professionals detect possible brain-relatedconcerns early, so that support can be provided sooner. Itincludes 18 simple questions about areas such as attention,memory, reading, anxiety, autism-related traits, and mood.The questionnaire can be completed by parents, caregivers,or the individual with DMD and takes less than 5 minutes.

It does not give a diagnosis but highlights areas that may re-quire further evaluation.

In this international study, 835 individuals with DMDfrom 38 countries (aged 5–42 years) completed the screenerin 11 languages. More than half (55%) already had at leastone diagnosis such as attention-deficit/hyperactivity disor-der, dyslexia, or anxiety. The results showed that the BINDscreener is reliable and accurately identifies individuals witha higher risk of having a neurodevelopmental or neuropsy-chiatric condition. A score of 20 or higher (out of 72) on thescreener is recommended as an indicator to consider furtherassessment.

In summary, the BIND screener is a quick and accessi-ble tool that helps and empowers families and healthcareteams to recognize brain-related challenges in DMD earlier,encouraging timely in-depth assessment, intervention, andbetter support for everyday life.

For more information about BIND-S contact info@worldduchenne.org.