MD STARnet Data and Statistics

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

Race/Ethnicity

* includes Native American, American Indian, Alaskan Native, multiple races, and other races

Insurance Type

• 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

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• The median age of survival in males with DMD was 23.7 years.³
• Steroids, cough assist, and scoliosis surgery were linked to prolonged survival in males with DMD.³

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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}

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• 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

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• 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

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• 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

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• 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

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• 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

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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.¹¹
• About 8 in 10 males (82%) with DBMD ages 10 through 14 years used a wheelchair.¹¹
• 9 in 10 males (90%) with DBMD ages 15 through 24 years used a wheelchair.¹¹

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• 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

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