Updated TSC diagnostic criteria and surveillance and management recommendations presented here should provide an improved framework for optimal care of those living with TSC and their families

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2021-Updated-TSC-DiagnosticCriteria-Surveillance-and-Management-Recommendations

This booklet is intended to provide basic information about tuberous sclerosis complex (TSC). It is not intended to, nor does it, constitute medical or other advice. Readers are warned not to take any action with regard to medical treatment or otherwise based on the information in this brochure without first consulting a physician.

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Introduction to TSC

The TAND-Lifetime (TAND-L) Checklist is designed for clinicians to use in a clinical interview to get an idea of the lifetime presence of TAND difficulties at all TAND levels.

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English : TAND-L-English
Hindi : TAND-L-Hindi

The TAND-SQ is a self-report quantified checklist that individuals with TSC or their caregivers can use to document TAND difficulties. The TAND-SQ also allows for the quantification of the severity of TAND within the last month. Scroll down for more information on both TAND Checklists.

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TAND-SQ-2023

Tuberous sclerosis complex (TSC) is a genetic disorder characterized by the growth of benign tumors in various organs, including the brain, skin, kidneys, heart, lungs, and eyes. Symptoms and their severity vary widely, but common manifestations include seizures, developmental delays, intellectual disability, and skin abnormalities.

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4.Symptoms and Manifestations TSC

Annual surveillance recommendations for individuals with Tuberous Sclerosis Complex (TSC) include regular monitoring for various manifestations like brain tumors (SEGA), seizures, kidney problems, and lung issues, as well as screening for TSC-associated neuropsychiatric disorders (TAND). These recommendations are tailored to the individual’s age, symptoms, and specific TSC features.

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3.Surveillance Recommendations TSC

The consensus recommendations should provide a systematic framework to approach the identification and treatment of TAND for health, educational, social care teams and families who live with TSC. To ensure global dissemination and implementation of these recommendations, partnerships with the international TSC community will be important. One of these steps will include the generation of a “TAND toolkit” of “what to seek” and “what to do” when difficulties are identified in TAND clusters.

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Vries_et_al-2023-Journal_of_Neurodevelopmental_Disorders