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Abstracts & Posters

A Pilot Study to Evaluate Adherence to the 2010 Care Considerations for Duchenne Muscular Dystrophy at Selected Clinics Identified by the Muscular Dystrophy Surveillance Tracking and Research Network (MDSTARnet) Sites. Phase 2: Data from Medical Record Abstraction

key information

source: American Academy of Neurology

year: 2016

authors: Shree Pandya, Kristin Caspers Conway, Christina Trout, Christina Westfield, Deborah Fox


To evaluate through abstraction of medical records adherence to current DMD care recommendations by a group of clinics associated with MDSTARnet.

Care recommendations for the management of patients with Duchenne Muscular Dystrophy (DMD) were developed by an international panel of experts convened and supported by the Centers for Disease Control and Prevention (CDC) and published in 2010. In 2013, the CDC funded a pilot study to adherence to these recommendations by selected clinics treating dystrophinopathy patients.

The pilot study included two phases. In the first phase, a survey was distributed to 9 clinic directors identified by the MD STARnet sites in Arizona, Colorado, Iowa and western New York. The second phase involves abstraction of medical records for dystrophinopathy cases birth through age 21 identified by the same sites and followed from 1/1/ 2012 through 12/31/2014. Information being abstracted includes medical providers and frequency of visits to these providers; diagnostic assessments; corticosteroid use; and assessment and management of neuromuscular, orthopedic, rehabilitation, pulmonary, cardiac, gastrointestinal/nutritional, endocrine, and neurocognitive /psychosocial problems.

Medical record abstraction is currently ongoing and expected to be completed by the end of 2015. Preliminary findings describing adherence to care recommendations will be presented at the meeting. To complement these results, the results from the clinic director survey will also be presented.

Based on the findings from phase 1 -Clinic Director Survey – a majority of the clinics seem to have adopted most of the care recommendations in their management practices. Results from phase 2 – Medical Record Abstraction- will provide additional information about current practices at the provider and case level. The availability of data from a clinic director survey and medical record abstraction data afford a unique perspective on assessing the use of best practice, as prescribed in the care recommendations, for dystrophinopathy patients.

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