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Médecine thérapeutique / Pédiatrie

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Palliative care in neuromuscular disorders: a potential research subject Volume 17, issue 3, Juillet-Août-Septembre 2014

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Authors
1 Service de neuropédiatrie, Centre de référence neuromusculaire GNMH ;
2 Equipe Mobile de Soins Palliatifs(EMSP), Hôpital Necker-Enfants malades, 149, rue de Sèvres, 75015 Paris, France
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The primary objective for medical teams remains the cure and advances in our understanding of diseases, particularly rare diseases such as neuromuscular disorders. Paediatric neuromuscular disorders are often chronic diseases which require treatment without curative care in many cases. As genetic studies and innovative therapies emerge and evolve, it is very important to evaluate our medical practices and to view palliative care as a genuine and valuable form of medical treatment. The French Neuropediatric Society conducted a retrospective study over two ten-year periods to assess supportive and palliative care in a specific neuromuscular disorder, type 1 spinal muscular atrophy, with the French Neuromuscular Network. A prospective and collaborative study began 18 months ago with 20 paediatric centres to evaluate our practices and to better understand the natural evolution of the disease in terms of medical practice from the point of view of caregivers, including children's parents.