Congential Myotonic Dystrophy Analysis of US National Registry

Editors Note: This article is an analysis of the US registry. The US registry is a highly biased sample of patients with Myotonic Dystrophy. The registry has very few members with CMD and the questionnaires that are sent out do not deal with questions or issues with the Congenital form of DM. While the information here is somewhat useful many of the symptoms and issues of patients with CMD are not included.

The percentage of the population with DM in the USA registered is less than 5% leading to a highly biased sampling.

PMCID: PMC2952518

Congenital myotonic dystrophy in a national registry
Paediatr Child Health. 2010 October; 15(8): 514–518.

Patrick Prendergast, BSc,1 Sandra Magalhaes, BHSc MSc,1 and Craig Campbell, MD MSc2



To describe the neonatal symptoms, developmental problems and chronic multisystem medical morbidities of congenital myotonic dystrophy (CDM) patients registered in the United States National Registry of Myotonic Dystrophy – a disease-specific, self-report program maintained since 2002. Comparisons with the Canadian Paediatric Surveillance Program for CDM are highlighted.

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