From research to screening: the BIND Screener
Brain-related comorbidities are an important but often under-recognised aspect of Duchenne muscular dystrophy. The BIND Consortium has developed the BIND Screener, a brief questionnaire designed to help identify individuals who may be experiencing difficulties across a range of cognitive, behavioural, emotional and neurodevelopmental domains.
In this international validation study, the BIND Screener was evaluated in 835 individuals with DMD from 38 countries. The findings demonstrate good reliability and diagnostic accuracy, supporting its use as a practical first-line screening tool in both clinical and research settings. The study represents an important step towards more systematic recognition of brain-related comorbidities and, ultimately, earlier access to appropriate assessment and support.
Lay Summary
Duchenne muscular dystrophy (DMD) can affect more than muscles. Many people with DMD also experience difficulties with attention, learning, memory, emotions, behaviour, or social interaction. These brain-related difficulties can have an important impact on education, relationships, wellbeing and everyday life, but they are not always recognised or assessed.
The BIND (Brain Involvement iN Dystrophinopathies) Screener was developed to help identify these difficulties earlier. It is a short questionnaire containing 18 questions covering a range of brain-related areas. It can be completed by a person with DMD or by a parent or caregiver and takes around five minutes to complete. Importantly, the Screener does not provide a diagnosis. Instead, it highlights people who may benefit from more detailed assessment or support.
In this international study, researchers tested the BIND Screener in 835 people with DMD aged 5–42 years from 38 countries. The questionnaire was available in 11 languages. The results showed that the Screener was reliable and was able to distinguish between people who did and did not report previously diagnosed neurodevelopmental or neuropsychiatric conditions.
The study provides evidence that the BIND Screener can be used as a quick first step to identify possible brain-related difficulties across a wide age range. Earlier recognition could help people with DMD and their families access appropriate assessment, support and interventions.
Scientific Summary
Miranda and colleagues, on behalf of the BIND Consortium, developed and evaluated the BIND (Brain Involvement iN Dystrophinopathies) Screener as a brief instrument for identifying individuals with DMD who may be at risk of brain-related comorbidities. The 18-item proxy/self-report questionnaire was developed using existing literature and expert consensus and covers nine areas of neurocognitive and neurobehavioural comorbidity. It was translated into 11 languages and evaluated using data from 835 individuals with DMD aged 5–42 years across 38 countries.
The Screener demonstrated strong internal consistency (Cronbach’s α = 0.89), with a factor structure broadly consistent with the theoretical domains. The total score, termed the Duchenne Brain Comorbidity Score (DBCS), also correlated with clinical and cognitive measures in a validation subsample of 90 participants. Age-related differences were observed across several domains, supporting the importance of considering age when interpreting brain-related symptoms in DMD.
Diagnostic accuracy was assessed against previously diagnosed neurodevelopmental or neuropsychiatric conditions reported by participants or their parents. Receiver operating characteristic analysis produced an area under the curve of 0.78. A DBCS threshold of 20/72 provided the optimal balance in this sample, with sensitivity of 71.6% and specificity of 72.5%. The questionnaire had a modal completion time of approximately 4.3 minutes, supporting its potential use as a practical first-line screening tool in both clinical and research settings.
The authors emphasise that the BIND Screener is a screening instrument rather than a diagnostic tool. A positive result indicates that further assessment may be warranted; it does not establish the presence of a specific condition. The study also highlights the complexity and overlap of brain-related comorbidities in DMD, suggesting that a dimensional approach to symptoms may complement traditional diagnostic categories.
Take home messages
- Brain-related difficulties are common in DMD. They can include challenges with attention, learning, memory, behaviour, emotions and social functioning, but they may not always be identified as part of routine DMD care.
- The BIND Screener is a short, 18-item tool designed to identify potential brain-related comorbidities. It takes approximately five minutes to complete and can be used across a broad age range.
- The Screener was evaluated internationally. The study included 835 people with DMD aged 5–42 years from 38 countries, with the questionnaire available in 11 languages.
- The BIND Screener demonstrated good reliability and diagnostic accuracy. It had excellent internal consistency (α = 0.89), with a DBCS score of 20/72 identified as the optimal threshold in this study, giving 71.6% sensitivity and 72.5% specificity for previously diagnosed neurodevelopmental or neuropsychiatric conditions.
- The Screener is not a diagnostic test. Its purpose is to flag individuals who may benefit from more detailed assessment, helping healthcare professionals and families identify concerns that might otherwise go unrecognised.
- The study supports a more systematic approach to brain involvement in DMD. By providing a brief and standardised first-line screening approach, the BIND Screener could support earlier recognition of difficulties and facilitate appropriate assessment, intervention and support.
