Table 1.

Demographic and disease times data in the overall population

Total population	n=234 (186 families)
Male/female (%)	163 (70.0%)/71 (30.0%)
Mean age of disease onset (years), n=232	45.6±9.3 (18–71)
Mean age at last assessment (years), n=234	56.8±9.6 (31–82)
Mean time of disease progression (years), n=232	11.3±6.9 (1–45)
Mean age at genetic diagnosis (years), n=63	54.5±9.5 (30–81)
Mean time to genetic diagnosis (years), n=58	10.4±6.3 (1–29)
Mean age of death (years), n=36	63.9±8.1 (45–81)
Mean time to death (years), n=36	15.8±6.6 (2–31)

Order of data shown: n number of patients in which the data was available, mean, SD, minimum and maximum.