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Myotonic Dystrophy Type I Clinical Care Recommendations Influenced by DCEG Research

Posted on January 08, 2019

Text icon: Myotonic Dystrophy Type 1 Clinical Care Recommendations

In September 2018, the Myotonic Dystrophy Foundation released new consensus-based care guidelines for adults with myotonic dystrophy (dystrophica myotonica) type 1 (DM1). These are the first clinical guideline recommendations for patients with DM1 and the first time cancer was recognized as part of the DM1 phenotype.

The recognition of cancer phenotype in the DM1 clinical care recommendation is based on the seminal work of Shahinaz Gadalla, M.D., Ph.D., and Mark H. Greene, M.D., first published in 2011, and built upon a combination of astute clinical, epidemiologic, and translational collaborations (Gadalla et al., "Cancer risk among patients with myotonic dystrophy" JAMA 2011). Dr. Gadalla participated in the Working Group to establish the recommendation guidelines. The myotonic dystrophy research team in DCEG are Drs. Gadalla, Greene, Ruth Pfeiffer, Ana Best, Youjin Wang, and Rotana Alsaggaf

Read the Myotonic Dystrophy Foundation recommendations for DM1 clinical care

Read DCEG publications on cancer in DM1.