Duchenne muscular dystrophy: How networked information can relieve the burden on families and specialist departments

 

Lots of appointments, lots of specialist departments, lots of documents. Supporting a child with Duchenne muscular dystrophy (DMD) means that families have to do a lot of coordinating. Post Sanela Health Ltd and Duchenne Switzerland are now working together to ensure better connected care.  
For DMD in particular, the electronic patient record (EPR) can help by making important information available securely.  This makes it easier to share information and supports the coordination of day-to-day care.

 

If medical data is not available between healthcare institutions, relatives often bear the brunt of providing information. At the Duchenne Switzerland Conference 2025, discussions focused on current limitations related to care and how digital solutions can address these problems.

Duchenne muscular dystrophy: Care over many years

Duchenne muscular dystrophy (DMD) is a rare, progressive neuromuscular disorder that affects approximately 1 in 3,500 newborn boys. As the disorder progresses, functional abilities are gradually lost. Care requires close, long-term and multidisciplinary collaboration between various specialist disciplines and healthcare institutions.

In addition to medical issues, affected families have to deal with lots of organisational work in their day-to-day lives, often resulting in emotional and social pressure.

When information is spread out

Today, care is often fragmented. Various healthcare institutions such as hospitals, specialist clinics, physiotherapy and GP practices are involved and work with different systems. If there is no uniform standardisation, reports are laboriously forwarded by email or on paper. This takes time, increases the need for coordination, can lead to duplications, and involves the risk of information being lost or there being gaps in information.

Why the electronic patient record (EPR) helps here

The EPR is a secure, standardised storage location used throughout Switzerland for treatment-related documents. It can support the sharing of information between health professionals involved in treatment.

If treatment-relevant documents are stored in the EPR, they can be made available when they are needed and accessed from anywhere. This is an important step towards coordinated, patient-centred care.

Backed up by science: Swiss Medical Weekly publication on the Duchenne Switzerland Conference 2025

The findings from the Duchenne Switzerland Conference 2025 were published in the specialist journal Swiss Medical Weekly. The article summarises key challenges and approaches relating to psychosocial and digital care pathways and shows how structured sharing of information will improve the focus on the patient in the long term.

Link to publication:https://smw.ch/index.php/smw/article/view/5132/6543

What exactly does the partnership mean?

Duchenne Switzerland is now a partner of Post Sanela Health Ltd. Together, we will raise awareness of connected care and show how the EPR can support the secure flow of information between the departments involved, meaning that families will not have to deal with so much organisation as part of complex day-to-day care.

 

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