TABLE 2.
Demographic characteristics of eligible cases from the 2007 to 2011 MD STARnet pilot (n = 2,862)
| Type of muscular dystrophy | ||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| All MDs |
CMD |
DBMD |
Distal MD |
EDMD |
FSHD |
LGMD |
DM |
OPMD |
MD-NOS |
|||||||||||
| Characteristic | n = 2,862 | n = 86 | n = 739 | n = 17 | n = 22 | n = 278 | n = 260 | n = 943 | n = 119 | n = 398 | ||||||||||
| Age at start of projecta | ||||||||||||||||||||
| Number of casesb | 2,791 | 77 | 705 | 17 | 22 | 277 | 257 | 919 | 119 | 398 | ||||||||||
| Mean (SD) | 35.5 (21.7) | 14.8 (14.4) | 16.6 (12.6) | 43.9 (12.6) | 23.2 (14.7) | 43.8 (19.9) | 38.9 (21.5) | 39.5 (17.5) | 65.7 (9.8) | 46.9 (20.5) | ||||||||||
| Age at death | ||||||||||||||||||||
| Number of deaths | 411 | NR | 83 | NR | NR | 21 | 29 | 161 | 25 | 80 | ||||||||||
| Mean age (SD) | 51.6 (22.2) | 12.2 (7.5) | 25.8 (11.9) | NR | NR | 65.6 (8.5) | 67.0 (15.9) | 53.6 (16.3) | 77.0 (8.7) | 60.7 (20.6) | ||||||||||
| n | % | n | % | n | % | n | % | n | % | n | % | n | % | n | % | n | % | n | % | |
| Gender | ||||||||||||||||||||
| Female | 1,041 | 36.4 | 41 | 47.7 | 17 | 2.3 | NR | NR | NR | NR | 117 | 42.1 | 129 | 49.6 | 470 | 49.8 | 65 | 54.6 | 187 | 47.0 |
| Male | 1,821 | 63.6 | 45 | 52.3 | 722 | 97.7 | NR | NR | NR | NR | 161 | 57.9 | 131 | 50.4 | 473 | 50.2 | 54 | 45.4 | 211 | 53.0 |
| Race | ||||||||||||||||||||
| White/Caucasian | 2,294 | 80.2 | 66 | 76.7 | 578 | 78.2 | 12 | 70.6 | 21 | 95.5 | 228 | 82.0 | 202 | 77.7 | 804 | 85.3 | 75 | 63.0 | 308 | 77.4 |
| Black/African-American | 79 | 2.8 | NR | NR | 19 | 2.6 | NR | NR | NR | NR | NR | NR | 14 | 5.4 | 23 | 2.4 | 0 | 0.0 | 16 | 4.0 |
| Multiple/otherc | 211 | 7.4 | 12 | 14.0 | 86 | 11.6 | NR | NR | NR | NR | NR | NR | 16 | 6.2 | 44 | 4.7 | 12 | 10.9 | 22 | 5.5 |
| Unknown | 278 | 9.7 | NR | NR | 56 | 7.6 | NR | NR | NR | NR | 31 | 11.2 | 28 | 10.8 | 72 | 7.6 | 31 | 26.1 | 52 | 13.1 |
| Ethnicity | ||||||||||||||||||||
| Hispanic | 403 | 14.1 | 19 | 22.1 | 153 | 20.7 | NR | NR | NR | NR | 22 | 7.9 | 30 | 11.5 | 78 | 8.3 | 41 | 34.5 | 58 | 14.6 |
| Non-Hispanic | 1,712 | 59.8 | 58 | 67.4 | 495 | 67.0 | NR | NR | NR | NR | 159 | 57.9 | 143 | 55.0 | 590 | 62.6 | 31 | 26.1 | 207 | 52.0 |
| Unknown | 747 | 26.1 | 9 | 10.5 | 91 | 12.3 | NR | NR | NR | NR | 97 | 34.9 | 87 | 33.5 | 275 | 29.2 | 47 | 39.5 | 133 | 33.4 |
Note. MD STARnet = muscular dystrophy surveillance, tracking and research network; MD = muscular dystrophy; CMD = congenital muscular dystrophy; DBMD = Duchenne and Becker muscular dystrophy; EDMD = Emery– Dreifuss muscular dystrophy; FSHD = facioscapulohumeral muscular dystrophy; LGMD = limb-girdle muscular dystrophy; DM = myotonic dystrophy; OPMD = oculopharyngeal muscular dystrophy; MD-NOS = muscular dystrophy-not otherwise specified; SD = standard deviation; NR = not reported due to small case counts.
Age at start of project is defined as age on January 1, 2007.
Number of cases used to calculate age at start of project excludes cases that were born on or after January 1, 2007.
Multiple/other race includes American-Indian/Alaska Native, Asian, multiple races, Native Hawaiian/Pacific Islander, and other.