Data & Statistics
MD STARnet data from study year 2007 has yielded data on the prevalence, wheelchair use, and survival of individuals with Duchenne/Becker muscular dystrophy (DBMD) from four states. Other studies from MD STARnet have focused on the delay in diagnosis and the economic costs of those conditions.
It is not known exactly how many people of all ages in the United States have DBMD. An estimated 1 of every 5,600 to 7,700 males 5 through 24 years of age had DBMD. That is approximately equal to a prevalence of 1.3 to 1.8 per 10,000 males 5 through 24 years of age in the four states.1 [Read article]
In the four states, the percentage of males with DBMD 5 through 24 years of age using a wheelchair varied by age group as follows: 1
- 29% of males 5 through 9 years of age
- 82% of males 10 through 14 years of age
- More than 90% of males 15 through 24 years of age
Also in the four states, the percentage of males with DBMD 5 through 24 years of age who were living at the end of 2007 study year (December 31, 2007) varied by age group as follows: 1
- 100% of males 5 through 9 years of age
- 99% of males 10 through 14 years of age
- 85% of males 15 through 19 years of age
- 58% of males 20 through 24 years of age
- In the absence of a family history of DBMD, a delay of 2.5 years occurred from the time the first symptoms were noticed to the time a definite diagnosis of the condition was made.2
- First symptoms were noticed at an average age of 2.5 years.
- Concerns about symptoms resulted in a primary care provider examining the child at an average age of 3.6 years.
- The first creatine kinase (CK) test was done at an average age of 4.7 years (CK levels are higher among people with DBMD).
- Diagnosis of DMD was at an average age of 4.9 years.
Economic costs pertaining specifically to DBMD have not been reported. The MarketScan Commerical Claims and Encounters Database for the period 2001-2004, which includes paid medical and prescription drug claims of people covered by employer-sponsored health insurance, was used to calculate money spent on care for all types of MD.
- The yearly average cost in 2004 for medical care for privately insured individuals with any type of muscular dystrophy was $18,930, ranging from $13,464 at 5 through 9 years of age to $32,541 at 15 through 19 years of age.3 [Read article]
- Centers for Disease Control and Prevention (CDC).Prevalence of Duchenne/Becker muscular dystrophy among males aged 5-24 years - four states, 2007. MMWR Morb Mortal Wkly Rep. 2009 Oct 16;58(40):1119-22.
- Ciafaloni E, Fox DJ, Pandya S, Westfield CP, Puzhankara S, Romitti PA, et al. Delayed diagnosis in Duchenne muscular dystrophy: data from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet). J Pediatr 2009 Sept;155(3):380-5.
- Ouyang L, Grosse SD, Kenneson A. Health Care Utilization and Expenditures for Children and Young Adults With Muscular Dystrophy in a Privately Insured Population. J Child Neurol. 2008 Aug;23 (8):883-8.
- Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
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