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The commissioning of most health services for children is the responsibility of local clinical commissioning groups. NHS England has the role of commissioning the specialised services which patients with tuberous sclerosis access. In addition clinical policies are developed for new treatments that potentially change the impact of the disease.
NHS England has approved, as an in year service development, the routine commissioning of Everolimus for angiomyolipomas associated with tuberous sclerosis. The policy statement will be published in the next few days which will define the clinical criteria for which access is supported.
A full clinical policy for the use of Everolimus for subependymal giant cell astrocytoma is currently out for public consultation. This policy proposition will be considered for investment in the annual prioritisation round in June 2016.