Mental health in DMD part of a new screening tool

12 May 2026

Researchers working on the BIND project have developed a new screening tool designed to spot signs of brain-related conditions, such as anxiety, autism and depression, in those living with Duchenne muscular dystrophy (DMD).

For many people, Duchenne muscular dystrophy (DMD) is understood as a condition that affects muscles and physical strength. However, new published research from the BIND project across Europe, highlights something equally important that often receives less attention: DMD can also affect the brain, influencing how people think, feel, and behave.

People with DMD are more likely to experience conditions such as attention difficulties, autism, anxiety, depression, and learning challenges, however, these issues are frequently missed or diagnosed late. This means that many individuals and families are left without the support they need at the right time.

How a new screening tool is helping to change this

Researchers working on the BIND project developed a short, practical questionnaire called the BIND screener. This is a screening tool, which means it’s a simple set of questions used to spot early signs that someone might need more support.

The BIND screener is just 18 questions that take only a few minutes to complete. It’s designed as a first step: a way to notice when something might not be quite right and to prompt further support, rather than waiting until difficulties become overwhelming.

When the tool was tested in more than 800 people with DMD across different countries and age groups, the findings were striking. Over half had at least one diagnosed brain-related condition, and many were living with more than one.

Perhaps the most powerful part of the study is what it reveals about families’ experiences. Many parents reported feeling concerned about their child’s emotional wellbeing or behaviour, and a large number said these challenges affect the whole family. At the same time, access to support is limited. Only a minority had received specialist assessment or treatment, despite most families saying they wanted more help.

That gap matters because when these needs aren’t recognised, it’s not just about missed diagnoses, it can mean more stress, more uncertainty, and fewer opportunities for children and young people to thrive.

What is the next step?

The BIND screener worked well. It is quick and easy to use and flags potential difficulties early, which means it could realistically be introduced into everyday clinical care. We recently funded a project with Professor Francesco Muntoni to develop a permanent digital version of this screening tool.

By building simple screening into routine appointments, clinicians could identify concerns earlier, start conversations sooner, and connect families with the right support at the right time.

For Mental Health Awareness Week, the message is simple: mental health is not separate from DMD, it is part of it. Supporting emotional wellbeing, behaviour, and learning is just as vital as managing physical health.