Harmonizing care for rare diseases: How we developed the mitochondrial care network in the United States.

Molecular Genetics and Metabolism(2019)

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摘要
The mitochondrial medicine society (MMS) has previously highlighted the clinical landscape and physician practice patterns of mitochondrial medicine in the US and attempted to develop consensus criteria for diagnosis and management to improve patient coordinated care. Most recently, and in collaboration with US-based patient advocacy groups, we developed a clinical care network to formally unify US-based clinicians who provide medical care to individuals with mitochondrial disease; to define, design and implement best practices in mitochondrial medicine building on the current consensus guidelines and to improve patients' clinical outcomes.
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关键词
Primary mitochondrial disease,Care center, harmonizing care,Mitochondrial medicine society,Mitochondrial advocacy group
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