Table 1 Demographic data of participants (* prevalence)

Age at enrollment (N = 77)

51.6 ± 11.8

21–77

Age of symptomatic onset (N = 57)

42.4 ± 11.6

5–71

Age at diagnosis (N = 69)

46.8 ± 11.5

17–73

Age of onset of muscle weakness (N = 60, 76%*)

42.3 ± 9.6

12–67

Age at onset of Paget's disease (N = 18, 23%*)

47.3 ± 9.4

30–68

Age at onset of dementia (N = 9, 11%*)

54.8 ± 16.3

25–71

Participant Sex (N = M: F)

35:39

5–77

Racial Categories

N (%)

 White

63 (89%)

21–73

 Asian

3 (4%)

50–67

 Black or African American

1 (1%)

54

 Mixed or Other

4 (6%)

27–77

Ethnicity

 Hispanic or Latino

6 (10%)

56–62

 Non-Hispanic

54 (90%)

21–77