MD STARnet Data and Statistics
The following data and statistics come from MD STARnet. Data from the MD STARnet sites cannot be generalized to the entire United States.

How we got these numbers:
- The tables below show data on males with Duchenne or Becker muscular dystrophy in 10 MD STARnet states or regions where information was collected during the years 1982-2015. Incomplete records may cause the totals in each table to differ.
- These numbers represent males identified with asymptomatic, definite, or probable Duchenne or Becker muscular dystrophy, based on a rigorous set of criteria. This criteria are described in detail in Table 1 within the MD STARnet case definitions.
- Classifying someone as having Duchenne or Becker muscular dystrophy is based on when symptoms first appear, genetic testing results, muscle biopsy results, when an individual stopped walking, and steroid use. Those who could not be classified as having definite or probable Duchenne or Becker muscular dystrophy were excluded.
Phenotype
n
n
%
%
Duchenne
Duchenne
1052
1052
83.8%
83.8%
Becker
Becker
140
140
11.1%
11.1%
Unable to Determine
Unable to Determine
64
64
5.1%
5.1%
Race/Ethnicity
n
n
%
%
Asian/Hawaiian/Pacific Islander
Asian/Hawaiian/Pacific Islander
29
29
2.3%
2.3%
Non-Hispanic Black
Non-Hispanic Black
90
90
7.2%
7.2%
Hispanic/Latino
Hispanic/Latino
249
249
19.8%
19.8%
Non-Hispanic White
Non-Hispanic White
752
752
59.9%
59.9%
Other*
Other*
35
35
2.8%
2.8%
Unknown
Unknown
101
101
8.0%
8.0%
* includes Native American, American Indian, Alaskan Native, multiple races, and other races
Insurance Type
n
n
%
%
Public and Private
Public and Private
211
211
16.8%
16.8%
Public
Public
585
585
46.6%
46.6%
Private
Private
348
348
27.7%
27.7%
Uninsured
Uninsured
36
36
2.9%
2.9%
Unknown
Unknown
76
76
6.1%
6.1%
- The estimated prevalence of Duchenne and Becker muscular dystrophy (DBMD) was about 1 in every 5,000 males aged 5-9 years.1
- The prevalence of DBMD among Non-Hispanic blacks was lower than the prevalence among Non-Hispanic whites, and higher among Hispanics than Non-Hispanic whites. 1, 2
- The prevalence of Duchenne muscular dystrophy (DMD) was three times higher than the prevalence of Becker muscular dystrophy (BMD).2
Among males with DMD who did not have a family history of muscular dystrophy:
- There was an average of 2½ years between when a parent or caregiver noticed the first signs and symptoms of DMD, and when a diagnosis of DMD was made based on a muscle biopsy or a DNA test.4, 5
- The average age at diagnosis for DMD was 5 years.4, 5
Read the Key Findings on this research
[Read Scientific Summary of the Article]
[Read Scientific Summary of the Article]
- On average, non-Hispanic black or Hispanic children were tested for DBMD at later ages than non-Hispanic white children.6
- On average, non-Hispanic black or Hispanic children had creatine kinase (CK) testing about 1 year later and DNA testing about 2 years later than non-Hispanic white children.6
- Males with DBMD began treatment with steroids at an average age of 7 years.7
- Between about half and two-thirds of males (57% to 69%) with DBMD were treated with steroids.7
- The average age when boys began taking steroids was 7 years. This study also found that the average age when heart problems began was 14 years, and that for every year steroids were taken, the chance of developing heart problems decreased by 4%.7
[Read Scientific Summary of the Article]
- Males with DMD who continued to use steroids after they stopped walking developed lung problems later than males who never used steroids or stopped steroids around the time they stopped walking.8
[Read Scientific Summary of the Article]
- Of males with DMD who were treated with steroids,
- About 6 in 10 (64%) took prednisone,
- About 2 in 10 (22%) took deflazacort, and
- About 1 in 10 (14%) took both prednisone and deflazacort at different times.9
- On average, males with DMD who had not taken steroids stopped walking at about age 10 years.9
- On average, males with DMD who took steroids for less than 3 years stopped walking at about age 9½ years.9
- On average, males with DMD who took steroids for more than 5 years stopped walking at about age 12 years.9
- Hispanic and non-Hispanic black males with DMD started steroid treatment less often than non-Hispanic white males.10
- Non-Hispanic black males with DMD started steroid treatment an average of one year later than non-Hispanic white males with DMD.10
- Families with a known history of DMD were less likely to choose steroid treatment than families without a history of DMD.10
The proportion of males with DBMD who used a wheelchair varied by age:
- Just over 4 in 10 (45%) of the oldest males with DBMD in each family had one of three mental health concerns: behavioral concerns, depressed mood, or attention-deficit/hyperactivity disorder (ADHD).12
- Males with DBMD who took steroids were more than twice as likely to have behavioral concerns compared with their peers who did not take steroids.12
- Males 1-29 years of age with DBMD who were losing their ability to walk were more likely to have behavioral concerns. They were also more than three times as likely to have a depressed mood as those who were still able to walk independently.12
For more information on MD STARnet see Research and Tracking.
REFERENCES
- Zhang Y, Mann JR, James KA, et al. Duchenne and Becker Muscular Dystrophies’ Prevalence in MD STARnet Surveillance Sites: An Examination of Racial and Ethnic Differences. Neuroepidemiology. 2021 Mar;55(1):47-55.
- Romitti PA, Zhu Y, Puzhankara S, James KA et al. Prevalence of Duchenne and Becker muscular dystrophies in the United States. Pediatrics. 2015 Mar;135(3):513-21.
- Paramsothy P, Wang Y, Cai B et al. Selected clinical and demographic factors and all-cause mortality among individuals with Duchenne muscular dystrophy in the Muscular Dystrophy Surveillance, Tracking, and Research Network. Neuromuscular Disorders, 2022 Jun;32(6):468-476
- Ciafaloni E, Fox DJ, Pandya S, Westfield CP, Puzhankara S, Romitti PA, Mathews KD, Miller TM, Matthews DJ, Miller LA, Cunniff C, Druschel CM, Moxley RT. 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.
- Thomas S, Conway KM, Fapo O et al. Time to diagnosis of Duchenne muscular dystrophy remains unchanged: Findings from the Muscular Dystrophy Surveillance, Tracking, and Research Network, 2000-2015. Muscle Nerve. 2022 Mar;66(2):193-197.
- Holtzer C, Meany FJ, Andrews J et al. Disparities in the diagnostic process of Duchenne and Becker muscular dystrophy. Genet Med. 2011 Nov;13(11):942-947.
- Barber BJ, Andrews JG, Lu Z, West NA, Meaney FJ, Price ET, Gray A, Sheehan DW, Pandya S, Yang M, Cunniff C. Oral corticosteroids and onset of cardiomyopathy in Duchenne muscular dystrophy. J Pediatr. 2013 Oct;163(4):1080-4.e1.
- Butterfield RJ, Kirkov S, Conway KM, et al. Evaluation of effects of continued corticosteroid treatment on cardiac and pulmonary function in non-ambulatory males with Duchenne muscular dystrophy from MD STARnet. Muscle Nerve. 2022 Jul;66(1):15-23.
- Kim S, Campbell KA, Fox DJ, Matthews DJ, Valdez R; MD STARnet. Corticosteroid treatments in males with Duchenne muscular dystrophy: Treatment duration and time to loss of ambulation. J Child Neurol. 2015 Sept;30(10):1275-80.
- Fox DJ, Kumar A, West N, DiRienzo AG, James KA, Oleszek J; Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet). Trends with corticosteroid use in males with Duchenne muscular dystrophy born 1982-2001. J Child Neurol. 2015 Jan;30(1):21-6.
- 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
- Caspers Conway K, Mathews KD, Paramsothy P, Oleszek J, Trout C, Zhang Y, Romitti PA; MD STARnet. Neurobehavioral concerns among males with dystrophinopathy using population-based surveillance data from the Muscular Dystrophy Surveillance, Tracking, and Research Network.external icon J Dev Behav Pediatr. 2015 Jul-Aug;36(6):455-63.