Description of a multidisciplinary model of care in a French cohort of adult patients with tuberous sclerosis complex

Tuberous sclerosis complex (TSC) is a rare autosomal dominant genetic disorder. Due to the various manifestations of TSC and their potential complications, a multidisciplinary care approach is recommended. This study provides a precise description of a French cohort of 90 patients suffering from STB in adulthood. Their quality of life, i.e. physical health and mental health, was deteriorated at 47% and 43%, respectively. An evaluation of the patient’s family’s quality of life had been also performed with a dedicated survey. We have also established a model of a multidisciplinary approach enabled us to deliver optimal management of TSC patients with a high level of patient satisfaction. (By Dr Pierre Pfirmann, https://jmg.bmj.com/content/early/2020/05/14/jmedgenet-2019-106607 )

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