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Mol Genet Metab. 2019 May 23. pii: S1096-7192(19)30166-0. doi: 10.1016/j.ymgme.2019.05.012. [Epub ahead of print]

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

Author information

1
Department of Genetics, Massachusetts General Hospital, Boston, MA, United States of America. Electronic address: akaraa@mgh.harvard.edu.
2
Human Genetics, Children's Hospital of Philadelphia, Philadelphia, PA, United States of America.
3
MitoAction, Boston, MA, United States of America.
4
Foundation for Mitochondrial Medicine, Atlanta, GA, United States of America.
5
United Mitochondrial Disease Foundation, Pittsburgh, PA, United States of America.
6
Neurogenetics, Center for Pediatric Neurology, Cleveland Clinic Children's Hospital, Cleveland, OH, United States of America.

Abstract

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. Here we review the steps taken in collaboration with several stakeholders to develop goals and expectations for a mitochondrial care network (MCN), criteria for MCN site selection and formal launch of the network.

KEYWORDS:

Care center, harmonizing care; Mitochondrial advocacy group; Mitochondrial medicine society; Primary mitochondrial disease

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