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Table 5 Studies reporting mortality in TSC patients

From: A systematic review on the burden of illness in individuals with tuberous sclerosis complex (TSC)

Study / cause of death Epilepsy Kidney Brain structural LAM Other pulmonal Infection/sepsis Cardio-vascular Unknown Not described Undiscriminated tumor / cancer Undiscriminated, but TSC-associated Certainly not TSC Multiple causes N of deceased patients in study N of patients in study Mortality (%) Start evaluation period End evaluation period Calculated duration of evaluation period Actual evaluated period
Welin et al. 2017 [27] 3 5 15 7 30 386 7.8 2004 2014 10 8.8
Amin et al. 2017 [113] 4 8 1 2   1 16 284 5.6 1981 2015 34 8
Shepherd et al. 2017 [135] 9 9 9 4   4 2    3 9   49 355 13.8 n. r. n. r. n. r. n. r.
Eijkemans et al. 2015 [86] 3 9       13   4 29 351 8.3 1990 2012 22 15.8
Kingswood et al. 2016 [42] 16   16 334 4.8 1987 2013 26 17.4
Kristof et al. 2015 [104] 4 24 16   73 10 4   131 1004 13.0 1996 2011 15 n. r.
Zak et al. 2019 [124] 9 1 1 6 2 1 0 1 0 0   1 1 23 662 3.5 1998 2016 18 n. r.
SUM 28 31 11 12 2 29 18 19 104 15 10 14 1 294 3376 Mean 8.7 Mean 20.8 Mean 12.5
  1. LAM Lymphangioleiomyomatosis, n. r. Not reported, TSC Tuberous sclerosis complex; for data sources please refer to Table 2