Resource
TSC Diagnostic Criteria, Surveillance and Management Guidelines
FAQ
Diagnostic criteria
The clinical and genetic diagnostic criteria of 2021 are summarized below: MAJOR FEATURES MINOR FEATURES Hypomelanotic macules (≥3; at least 5mm diameter) “Confetti” skin lesions Angiofibroma (≥3) or fibrous cephalic
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Diagnostic criteria
In 2021, the International Tuberous Sclerosis Complex Consensus Group reviewed prevalence and specificity of TSC-associated clinical manifestations and updated the TSC diagnostic criteria published in 2013. Clinical features of TSC
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New TSC Academy course available!
A new TSC Academy course, “TSC Clinical Consensus Guidelines,” provides an overview of the importance of the International Tuberous Sclerosis Complex Diagnostic Criteria and Surveillance and Management Recommendations , how they
FAQ
Papers published following the 2012 International TSC Consensus Conference
Northrup H et al. Tuberous Sclerosis Complex Diagnostic Criteria Update: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference, Pediatric Neurology (October 2013) Krueger DA et al. Tuberous Sclerosis
FAQ
Updated 2021 clinical consensus guidelines
Northrup H et al. Updated International Tuberous Sclerosis Complex Diagnostic Criteria and Surveillance and Management Recommendations, Pediatric Neurology (August 2021). Stuart C et al. Beyond the Guidelines: How We Can
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Transition & Adult Years
As people with tuberous sclerosis complex (TSC) age and transition from pediatrics to adult care, certain manifestations which may or may not have been problematic during childhood or adolescence now
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Early & Childhood Years
It is common for medical providers to be unfamiliar with tuberous sclerosis complex (TSC), including neurologists and pediatricians. It is crucial to have a local neurologist and pediatrician involved in
FAQ
Where do I start?
In adulthood this can be by an incidental finding (meaning it was found by looking for something else) or an abrupt finding (such as a renal hemorrhage) which can be
FAQ
Where do I start?
Often, a TSC diagnosis can be sudden which can be even more overwhelming to process – there can be an immense amount of testing and specialist visits to coordinate all
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In utero diagnosis
The most common manifestation in utero are irregular growths in heart tissue, known as cardiac rhabdomyoma. These are benign (non-cancerous) and usually get smaller on their own as the child ages. Rhabdomyomas
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Spotlight on TSC Alliance
2024 marks the 50th anniversary of the TSC Alliance®! Throughout the year, we’ll celebrate five decades of progress as well as look forward with much promise for the future. Join
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Surveillance & management
Managing tuberous sclerosis complex (TSC) across the lifespan requires attentive surveillance and effective strategies. Delve into the challenges and considerations present in both the early and childhood years, as well
TSC Alert
In Memoriam: Margaret Susan (Sue) Povey, 1942–2019
The TSC Alliance is deeply saddened by the passing of Sue Povey, whose work contributed to some of the largest discoveries in the genetics of TSC. Our heartfelt condolences go
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Five things healthcare providers should know
Are you providing care to a patient with a suspected tuberous sclerosis complex (TSC) diagnosis? Here are five things you need to know: Early diagnosis and management are critical to
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Healthcare Providers
Tuberous sclerosis complex (TSC) is a complicated disorder that requires lifelong care from a variety of specialists. The TSC Alliance provides the resources below to connect healthcare providers with TSC
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Surveillance & treatment
The following table provides guidelines to help you and your loved one manage the treatment of TSC. Additional information for your physician is available here. Surveillance & management recommendations for TSC