OBJECTIVE: To review current approaches for obtaining patient data in Duchenne 
muscular dystrophy (DMD) and consider how monitoring and comparing outcome 
measures across DMD clinics could facilitate standardized and improved patient 
care.
METHODS: We reviewed annual standardized data from cystic fibrosis (CF) clinics 
and DMD care guidelines and consensus statements; compared current approaches to 
obtain DMD patient data and outcome measures; and considered the best method for 
implementing public reporting of outcomes, to drive improvements in health care 
delivery.
RESULTS: Current methods to monitor DMD patient information (MD STARnet, 
DuchenneConnect, and TREAT-NMD) do not yet provide patients with comparative 
outcome data. The CF patient registry allows for reporting of standard outcomes 
across clinics and is associated with improved CF outcomes. A similar patient 
registry is under development for the Muscular Dystrophy Association (MDA) 
clinic network. Suggested metrics for quality care include molecular diagnosis, 
ambulatory status and age at loss of ambulation, age requiring ventilator 
support, and survival.
CONCLUSIONS: CF longevity has increased by almost 33% from 1986 to 2010, in part 
due to a CF patient registry that has been stratified by individual care centers 
since 1999, and publically available since 2006. Implementation of outcome 
reporting for MDA clinics might promote a similar benefit to patients with DMD.