Introduction

The quality of care available to and quality of life of those living with DMD varies significantly between and within different European countries.

In order to understand the reasons for these disparities in care, CARE-NMD will distribute questionnaires to DMD patients and families to discover the level of care they receive and their perceptions of their quality of life. For more information on these questionnaires in the UK, see the patient questionnaires page.

In addition, care sites involved who see patients with DMD will be encouraged to update their records in the existing TREAT-NMD Care and Trial Site Registry, so that a better picture of the level of care available can be obtained.

This information will be used to identify gaps in high-quality care provision, and make training resources available to medical professionals.