European cross-sectional survey of current care practices for DMD

 

The publication of standardised care guidelines in 2010 was an important step towards improving DMD patient care. These guidelines were reproduced as “family guides”, and distributed to patients and health care providers via patient organisations, the TREAT-NMD network, and patient registries. The authors aimed to survey the extent to which these guidelines have been incorporated into clinical practice across European countries in both Eastern and Western regions. The objective of the EU-financed CARE-NMD project was to evaluate current care and quality of life in DMD patients in Europe. Here, they present information describing current care of >1,000 children and adults with DMD in seven European countries. This cross-sectional survey shows that despite development and broad dissemination of multidisciplinary care guidelines many patients still do not receive recommended interventions and treatments likely to improve quality of life.


Vry J, Gramsch K, Rodger S, et al. European Cross-Sectional Survey of Current Care Practices for Duchenne Muscular Dystrophy Reveals Regional and Age-Dependent Differences. J Neuromuscul Dis. 2016 Nov 29;3(4):517-527.