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Data & Statistics

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.

Prevalence and Survival

  • The estimated prevalence of Duchenne and Becker muscular dystrophy (DBMD) was 1 in every 7,250 males aged 5 – 24 years.1
  • The prevalence of DBMD among Non-Hispanic blacks was lower than the prevalence among Hispanics and Non-Hispanic whites.1
  • The prevalence of Duchenne muscular dystrophy (DMD) was three times higher than the prevalence of Becker muscular dystrophy (BMD).1

Read the Key Findings on this research

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  • By the end of 2007, over 8 in 10 males (85%) with DBMD who were born 15 through 19 years earlier were still living.2
  • By the end of 2007, just about 6 in 10 males (58%) with DBMD who were born 20 through 24 years earlier were still living.2

[Read Article]

Steroid Use

  • Males with DBMD began treatment with steroids at an average age of 7 years.3
  • Between about half and two-thirds of males (57% to 69%) with DBMD were treated with steroids.3

[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.4
  • On average, males with DMD who had not taken steroids stopped walking at about age 10 years.4
  • On average, males with DMD who took steroids for less than 3 years stopped walking at about age 9½ years.4
  • On average, males with DMD who took steroids for more than 5 years stopped walking at about age 12 years.4

[Read Article]

  • Hispanic and non-Hispanic black males with DMD started steroid treatment less often than non-Hispanic white males.5
  • Non-Hispanic black males with DMD started steroid treatment an average of one year later than non-Hispanic white males with DMD.5
  • Families with a known history of DMD were less likely to choose steroid treatment than families without a history of DMD.5

[Read Article]

Diagnosis

	Delay in Diagnosis of DMD graphic

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.6
  • The average age at diagnosis for DMD was 5 years.6

[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.7
  • On average, children 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.7

[Read Article]

Wheelchair Use

	Chart showing percentage of males with DMDB 5 to 24 years of age using a wheelchair

The proportion of males with DBMD who used a wheelchair varied by age:

  • About 3 in 10 males (29%) with DBMD ages 5 through 9 years used a wheelchair.2
  • About 8 in 10 males (82%) with DBMD ages 10 through 14 years used a wheelchair.2
  • 9 in 10 males (90%) with DBMD ages 15 through 24 years used a wheelchair.2

[Read Article]

Mental Health

Read the Key Findings on this research

[Read Article]

For more information on MD STARnet see Research and Tracking

Mental health and DBMD
Mental health concerns among males with Duchenne and Becker muscular dystrophy.
(Published: June 4, 2015)

DBMD prevalence by race/ethnicity
Proportion of Duchenne and Becker muscular dystrophy in the United States among certain races and ethnicities.
(Published: February 17, 2015)

New Tool for Parents Helps Address Concerns
A tool to help parents concerned about their child’s physical development.
(Published: February 23, 2016)

CDC’s New Muscular Dystrophy Research  
CDC’s Muscular Dystrophy Surveillance Tracking and Research Network is the only population-based muscular dystrophy tracking program in the US.
(Published: February 18, 2014)

Muscular Dystrophy: Kevin’s Story
Read about Kevin, a man with muscular dystrophy who doesn’t let the condition define him.
(Published: February 11, 2013)

References

  1. Romitti PA, Zhu Y, Puzhankara S, James KA, Nabukera SK, Zamba GK, Ciafaloni E, Cunniff C, Druschel CM, Mathews KD, Matthews DJ, Meaney FJ, Andrews JG, Conway KM, Fox DJ, Street N, Adams MM, Bolen J; MD STARnet. Prevalence of Duchenne and Becker muscular dystrophies in the United States. Pediatrics. 2015 Mar;135(3):513-21.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. Holtzer C, Meany FJ, Andrews J, Ciafaloni E, Fox DJ, James KA, Lu Z, Miller L, Pandya S, Ouyang L, Cunniff C. Disparities in the diagnostic process of Duchenne and Becker muscular dystrophy. Genet Med. 2011 Nov;13(11):942-947.
  8. 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. J Dev Behav Pediatr. 2015 Jul-Aug;36(6):455-63.
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