Newswise — NEW YORK, January 17, 2019 – ONEVoice, a landmark survey funded by the Muscular Dystrophy Association (MDA) and conducted by Edge Research, has identified key areas of concern among more than 3,000 respondents – 2,430 adults with neuromuscular disease and 932 caregivers/family members – as well as ways in which many of these concerns can be addressed.  

“MDA is committed to transforming the lives of people with neuromuscular disease and we believe the ONEVoice study moves us one step closer to our objectives,” says MDA President and Chief Executive Officer Lynn O’Connor Vos. “We are in a position to facilitate this transformation, through MDA’s national network of multidisciplinary clinics providing best-in-class care at more than 150 of the nation’s top medical institutions, our multimillion-dollar commitment to research and programs to enrich patients’ lives.”  

Key findings of the survey and solutions/opportunities include:

  • Increasing the understanding of genetic testing’s importance. Nearly a third of adult patients say they have not had their diagnosis confirmed through genetic testing. Genetic testing not only is used to confirm a disease but also can help predict disease course, identify recurrence risk, facilitate enrollment in clinical trials and assist in developing a targeted treatment plan.  
  • Increasing knowledge about clinical trials. Three-quarters of surveyed neuromuscular patients have never participated in a clinical trial, but the interest is high. Nearly 8 in 10 survey respondents say they are interested in finding a clinical trial for which they may be eligible. MDA has numerous solutions to this need for information, among them the Clinical Trials Finder Tool on and the new NeuroMuscular ObserVational Research (MOVR) Data Hub, which will help health care professionals match patients with available treatments as well as appropriate clinical trials.
  • Increasing access to expert clinical care. More than 3 in 4 respondents have concerns about access to health care and/or health care professionals with expertise in neuromuscular disease. Existing solutions include:
    • Specialized care provided at MDA’s Nationwide Care Center Network, the largest network of neuromuscular clinics, providing multidisciplinary care at 150 leading medical institutions across the U.S. MDA Care Centers also serve as a hub of neuromuscular research activity, with more than 12,000 individuals participating in clinical trials and natural history studies across the network in 2017 alone.
    • For those in more rural or remote areas of the country, or without easy access to a Care Center, telemedicine offers a viable solution for cost-effective, real-time interaction and communication with specialists. However, only 20 percent of survey respondents say they feel informed about telemedicine, while 1 in 3 say access to telemedicine is a major concern. Lower-income patients have higher levels of concern about access and report being less informed about telemedicine.
  • Increasing independence and mobility are major concerns for 64 percent of the neuromuscular community and were the top concerns of those surveyed.   

“The ONEVoice study also found that the neuromuscular disease community is eager for information and counts on MDA to fill this need,” Vos says. Three out of 4 survey respondents say they use MDA for information on issues related to neuromuscular disease. The MDA website is a key touchpoint for the neuromuscular community, with more than 70 percent saying they have visited the site and 56 percent reporting they have reached out in other ways to MDA for information/assistance.

“This survey is part of our continued commitment to engaging our community and doing our utmost to transform the lives of neuromuscular patients and their families,” Vos says.


Edge research conducted an online survey of 3,362 members of the MDA community, including 2,430 adult patients and 932 parents/caregivers (e.g. parents, spouse/partners). The survey was fielded from Jan. 18 through Feb. 20, 2018.

For the full survey results, please visit  

About the Muscular Dystrophy AssociationMDA is committed to transforming the lives of people affected by muscular dystrophy, ALS and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA’s MOVR is the first and only data hub that aggregates clinical, genetic and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development. MDA supports the largest network of multidisciplinary clinics providing best-in-class care at more than 150 of the nation’s top medical institutions. Our Resource Center serves the community with one-on-one specialized support, and we offer educational conferences, events and materials for families and health care providers. Each year thousands of children and young adults learn vital life skills and gain independence at MDA Summer Camp and through recreational programs, at no cost to families. For more information, visit


Other Link: Survey