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 five MD STARnet sites during the years 1982-2011. Incomplete records may cause the totals in each table to differ. Where there were fewer than 10 patients, the exact number of patients is withheld to protect patient confidentiality.
- These numbers represent males identified with 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 publication.external icon
- 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.
Type of Muscular Dystrophy
|Type||Arizona||Colorado||Georgia||Iowa||Western New York
Type of Mutation*
|Type||Arizona||Colorado||Georgia||Iowa||Western New York
* The type of mutation is based on genetic testing results when available in the medical record.
** The total is not reported to protect the confidentiality of patients in Western New York.
Medicaid Status by Age
|Status||Arizona||Colorado||Georgia||Iowa||Western New York
|Medicaid (under age 18 years)||61||45||83||37||19||245|
|Medicaid (18 years and above)||33||42||29||28||19||151|
|No Medicaid (under age 18 years)||36||44||47||21||26||174|
|No Medicaid (18 years and above)||<10||<10||12||<10||11||40|
Age group is based on the person’s age at the last available insurance record between 2009 and 2012. Medicaid coverage is indicated by any listing of Medicaid or Children’s Health Insurance Program (CHIP) insurance in the medical record.
Age in Years (as of 12/31/2011) in All MD STARnet Sites
|Less Than 5||33|
|18 or more||262|
Race/Ethnicity in All MD STARnet Sites
*The term “other” includes Asian, Hawaiian or other Pacific Islander, Native American, American Indian or Alaska Native, and multiracial classifications. Males without race/ethnicity information in the medical record are included in the “other” category.
- 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
- 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
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
- On average, non-Hispanic black or Hispanic children were tested for DBMD at later ages than non-Hispanic white children.7
- 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.7
- 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
- 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%.3
- 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
- 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
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
- 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).8
- 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.8
- 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.8
- 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 Statesexternal icon. Pediatrics. 2015 Mar;135(3):513-21.
- 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.
- 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 dystrophyexternal icon. J Pediatr. 2013 Oct;163(4):1080-4.e1.
- 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.external icon 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 1982-2001external icon. J Child Neurol. 2015 Jan;30(1):21-6.
- 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).external icon J Pediatr. 2009 Sept;155(3):380-5.
- 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 dystrophyexternal icon. Genet Med. 2011 Nov;13(11):942-947.
- 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.