Table 1 Patient characteristics

Current age or age at death^a, years

Mean (SD)

5.5 (1.5)

12.3 (2.3)

24.0 (12.7)

39.0 (9.0)

12.9 (12.1)

Median

6 0.0

12.5

24.0

39.0

7.3

Range

2–7.5

9–16

15–33

30–48

2–48

Age symptoms first appeared, years

Mean (SD)

1.4 (0.7)^b

4.6 (1.1)^c

10.5 (4.9)

22.5 (3.5)^d

5.7 (7.0)^e

Median

1.3^b

5.0^c

10.5

22.5^d

2.8^e

Range

0.3–2.5^b

3–6^c

7–14

20–25^d

0.3–25^e

Age at diagnosis, years

Mean (SD)

2.4 (0.4)^b

5.9 (0.3)^c

11.5 (4.9)

24.5 (2.1)^d

6.9 (7.2)^e

Median

2.5^b

6.0^c

11.5

24.5^d

4.3^e

Range

1.5–3^b

5.5–6.2^c

8–15

23–26^d

1.5–26^e

Diagnostic delay, years

Mean (SD)

0.9 (0.8)^b

1.3 (1.2)^c

1.0 (0)

2.0 (1.4)^d

1.2 (0.9)^e

Median

0.8^b

1.2^c

1.0

2.0^d

1.0^e

Range

0–2.3^b

0–3^c

0

1–3^d

0–3^e