| Alive, n (%)a
|
122 (87.1) |
100 (92.6) |
22 (68.8) |
| Last documented age, years (alive) |
| Mean (SD) |
11.5 (7.7) |
11.3 (6.4) |
12 (12.4) |
| Median (range) |
9.8 (0.6-62.5) |
9.9 (0.8-28.8) |
8.0 (0.6-62.5) |
| Deceased, n (%) |
18 (12.9) |
8 (7.4) |
10 (31.3) |
| Last documented age, years (deceased) |
| Mean (SD) |
12.5 (4.9) |
15.1 (3.9) |
10.4 (4.8) |
| Median (range) |
13.4 (3.3-20.2) |
15.3 (9.1-20.2) |
12.2 (3.3-16.2) |
| Cause of death, n (%) |
|
|
|
| Related to MPS II |
7 (38.9) |
3 (37.5) |
4 (40.0) |
| Unclear if related to MPS II |
5 (27.8) |
2 (25.0) |
3 (30.0) |
| Unknown |
6 (33.3) |
3 (37.5) |
3 (30.0) |
| Age at diagnosis, yearsb
|
n=136 |
n=105 |
n=31 |
| Mean (SD) |
3.8 (5.8) |
3.5 (3.4) |
4.8 (10.4) |
| Median (range)c,d
|
2.8 (-0.1-59.7) |
2.8 (-0.1-17.8) |
2.8 (0.2-59.7) |
| Cognitive impairment, n (%) |
87 (62.1) |
69 (63.9) |
18 (56.3) |
| Family history of MPS II, n (%)e
|
53 (37.9) |
40 (37.0) |
13 (40.6) |
| Sibling(s) with MPS IIf
|
33 (62.3) |
22 (55.0) |
11 (84.6) |
| Uncle(s) with MPS IIf
|
15 (28.3) |
12 (30.0) |
3 (23.1) |
| Ethnicity, n (%) |
|
|
|
| Caucasian |
76 (54.3) |
54 (50.0) |
22 (68.8) |
| Black/African American |
25 (17.9) |
18 (16.7) |
7 (21.9) |
| Hispanic/Latino |
21 (15.0) |
20 (18.5) |
1 (3.1) |
| Mixed |
7 (5.0) |
6 (5.6) |
1 (3.1) |
| Asian |
5 (3.6) |
4 (3.7) |
1 (3.1) |
| Other |
5 (3.6) |
5 (4.6) |
0 (0.0) |
| Unknown |
1 (0.7) |
1 (0.9) |
0 (0.0) |
| Insurance status |
|
|
|
| Private |
58 (41.4) |
43 (39.8) |
15 (46.9) |
| Medicaid |
57 (40.7) |
46 (42.6) |
11 (34.4) |
| Multi-insurance |
13 (9.3) |
10 (9.3) |
3 (9.4) |
| Other |
9 (6.4) |
7 (6.5) |
2 (6.3) |
| Unknown |
2 (1.4) |
2 (1.9) |
0 (0.0) |
| None |
1 (0.7) |
0 (0.0) |
1 (3.1) |