TSC Associated Neuropsychiatric Disorders (TAND)

What is TAND?

Tuberous sclerosis complex (TSC) is associated with a wide range of cognitive, behavioral and psychiatric manifestations. These manifestations are often of greater concern to individuals with TSC and their families and caregivers than other symptoms of TSC such as epilepsy, skin lesions or kidney problems. TAND (TSC Associated Neuropsychiatric Disorders) is a new terminology to describe the interrelated functional and clinical manifestations of brain dysfunction in TSC, including aggressive behaviors, autism spectrum disorders, intellectual disabilities, psychiatric disorders, neuropsychological deficits, as well as school and occupational difficulties.

Care should be taken to perform appropriate assessments at regular intervals as detailed in the consensus clinical guidelines for the assessment of TAND in individuals with TSC. Appropriate screening will identify these cognitive and behavioral problems and lead to implementation of relevant intervention strategies to facilitate the development of appropriate skills, to prevent the emergence of further problems, and to manage existing disorders, syndromes or psychological issues.

The TAND Checklist

The TAND Checklist is available in 19 languages at the TANDem website, you can access these translations here.

Those wishing to translate the TAND Checklist into another language should download the following documents and follow the instructions:

TANDem Project

As TAND is such an urgent unmet need in the global TSC community, TANDem is an international multi-disciplinary mobile-health project to empower families and individuals who live with tuberous sclerosis complex (TSC) around the world. A broad range of stakeholder groups was assembled for the TAND Consortium, including 26 members from 10 countries, representing all World Health Organization (WHO) regions. Members include a broad range of stakeholder groups (including family representatives, non-profit organizations, researchers, technology experts, clinicians, social scientists, statisticians) and bring highly interdisciplinary skills to the project. The consortium is dedicated to improving access to TAND care and resources worldwide.

Learn More

Questions?

For more information, please send email to [email protected]rtium.org.

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