Neuromuscular Community Survey Identifies Key Issues


The Muscular Dystrophy Association (MDA) has announced results of a landmark survey that asked more than 3,000 people affected by neuromuscular disease (NMD) about their key areas of concern and possible solutions for those concerns. 

Key findings emphasized the importance of access to care, information about genetic testing, and opportunities to participate in clinical trials. The need to increase independence and mobility was also a key concern for 64% of those who responded. 

More than 75% of respondents have concerns about access to health care in general or access to health care professionals with expertise in NMD. The MDA noted that their nationwide care center network provides multidisciplinary care at 150 leading medical centers that are also participating in research in NMD. When asked about telemedicine, a potential solution for those who have difficulty traveling to a care center, only 20% of respondents felt they were informed about it. Approximately 30% said they were concerned about accessing telemedicine. People with lower incomes were more likely to have concerns about lack of information about or access to telemedicine. 

Almost 30% of the patients said their diagnosis had not been confirmed with genetic testing, notable because such testing not only confirms diagnoses, but can also help identify appropriate potential enrollees for clinical trials. Genetic tests can also provide more detailed information about disease course. More than 80% of patients said they would be interested in participating in clinical trials yet 75% have never done so, suggesting that there is an unmet need for informing patients about potential trials. 

The MDA noted in their announcement that they have solutions for this unmet need, including their clinical trials finder tool on and their new neuromuscular observational research (MOVR) data hub, the latter of which can also help match new treatments to specific patients. 

MDA President and Chief Executive Officer Lynn O'Connor Vos said, “This survey is part of our continued commitment to engaging our community and do our utmost to transform the lives of neuromuscular patients and their families." 


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