Tuberous Sclerosis Complex (TSC): Expert Recommendations for Provision of Coordinated Care.

Regional TSC clinics should be responsible for the diagnosis of patients with TSC, and the provision of routine care and support for patients and their families. Regional services need to ensure provision of the supportive care needed by patients and their families, including referral for individualized education plans for patients, genetic counseling for family members, and ongoing support for both the patient and their family from a patient association. There is a need to improve TSC management to ensure patients have early access to appropriate treatment and preventive measures - both to minimize long-term effects of TSC where possible, and to support a frequently vulnerable patient group and their families. We advocate that specialist expertise be provided by centralized TSC "hubs", with routine patient management coordinated centrally and undertaken in regional TSC networks to facilitate optimal resource use and improve the comprehensive care of TSC patients. [Extracted from the article]