Although expert centres for Duchenne care do exist in most European countries, many patients still do not receive treatment according to current best-practice guidelines.
The main objective of CARE-NMD is to establish an inclusive reference network of care centres which specialise in the treatment of Duchenne muscular dystrophy, in order to improve the quality of care for patients.
The project will analyze current treatment practices and by this uncover inequalities between and within participating European countries. This will for the first time provide a comprehensive overview of the current state of care for Duchenne patients.
In turn, this will enable the identification of situations where best-practice recommendations are not followed, allowing for the development of training programmes tailored to local needs. These programmes will implemented utilising the local expertise of project Partners and supported by the international resources of the project.
CARE-NMD will also analyze the health-related quality of life (HRQL) in Duchenne patients and their families across and within countries.