Nutrition in Duchenne muscular dystrophy 16-18 March 2018, Zaandam, the Netherlands

Verhaart IEC, van den Engel-Hoek L, Fiorotto ML, Franken-Verbeek M, Vroom E, workshop p. Nutrition in Duchenne muscular dystrophy 16-18 March 2018, Zaandam, the Netherlands. Neuromuscular disorders : NMD 2018;28:680-689

Verhaart_2018_Neuromuscul Disord. Aug;28(8);680-689

A workshop has been held to discuss the role of nutrition in DMD. The current care guidelines considering nutrition, research and information for patient/caregivers. Nutrition currently plays a minor role in care, while it has a large impact on disease progression and quality of life. It should be more tailored to age and stage of disease. Since still a lot is unknown about the precise role of nutrition and metabolism, it was agreed that more research is needed in a standardized way. Also good and understandable information and advices easily implementable in daily life are lacking. Therefore it was decided to make information leaflet and videos for patients/caregivers.

 

Introduction

Twenty-six representatives of academia, clinics, patient  organisations and industry from eight countries (Argentina; Australia; Belgium; Italy; the Netherlands; Switzerland; United Kingdom; United States) attended the workshop on ‘Nutrition in Duchenne muscular dystrophy’ organised by the Duchenne Parent Project the Netherlands (DPP). During the workshop current knowledge and clinical practice regarding nutrition in DMD was discussed, as well as research, preclinical and clinical, and guidelines for patients and caretakers.

The overall aim of the workshop was to evaluate the current knowledge concerning nutrition in DMD and to identify the existing gaps in research and information for patients. The objectives were to (1) discuss the existing literature concerning body composition, bone health, nutritional and metabolic aspects, the use of supplements and dental and swallowing problems in DMD; (2) determine priorities and Standard Operating Procedures (SOPs) for future research; (3) establish a task force to improve nutritional guidelines and information for patients and their caretakers.

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