The muscular dystrophies are the heterogeneous group of inherited muscular disorders characterized by muscle wasting and weakness, and are affecting both children and adults. The worldwide prevalence of inherited neuromuscular diseases estimated in a review study was of 28.6/100,000 and 33.3/100,000 if rarer disorders are included. As a group, these disorders, covers a considerable proportion of patients with chronic disease, however, recent studies of prevalence of the muscular dystrophies in the United States are lacking. This project will conduct population-based surveillance and longitudinal follow-up of individuals with muscular dystrophies and neuromuscular disorders using the methods from the Muscular Dystrophy surveillance Tracking and Research Network (MDSTARnet). This will be used for public health research to examine prevalence, survival, health care services and disparities in care.
Using the methods of the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet), including case ascertainment and longitudinal follow up, this project will seek to characterize the population of individuals who have a variety of muscular dystrophies and neuromuscular disorders.
| Soim, Aida; Smith, Michael G; Kwon, Jennifer M et al. (2018) Is There a Delay in Diagnosis of Duchenne Muscular Dystrophy Among Preterm-Born Males? J Child Neurol 33:537-545 |
| Conway, Kristin M; Ciafaloni, Emma; Matthews, Dennis et al. (2018) Application of the International Classification of Functioning, Disability and Health system to symptoms of the Duchenne and Becker muscular dystrophies. Disabil Rehabil 40:1773-1780 |
| Latimer, Rebecca; Street, Natalie; Conway, Kristin Caspers et al. (2017) Secondary Conditions Among Males With Duchenne or Becker Muscular Dystrophy. J Child Neurol 32:663-670 |
| Gissy, Jacob J; Johnson, Teresa; Fox, Deborah J et al. (2017) Delayed onset of ambulation in boys with Duchenne muscular dystrophy: Potential use as an endpoint in clinical trials. Neuromuscul Disord 27:905-910 |
