Core principles for the identification and treatment of TAND

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1. Everyone with TSC is at risk of TAND.
2. Therefore, everyone with TSC needs lifelong monitoring for the emergence of TAND.
3. Screen for TAND at least annually and follow up with appropriate action.
4. The goal is early identification and early intervention, rather than a “watch and wait” approach.
5. TAND clusters cluster together and the presence of one should alert families and teams to explore others.
6. Always consider the impact of physical health problems and medications for physical health problems on TAND.
7. Clinicians should work with families and caregivers as lived experts in TSC and TAND, especially considering the lack of research evidence of TAND in TSC.
8. A whole system plan including biological, psychological and social aspects should be used to understand needs and provide interventions and support.
9. Evidence-informed assessment and interventions should be used from TSC studies or the general population in the absence of TSC-specific evidence.
10. The goal of TAND support is to help everyone living with TSC achieve an optimal quality of life as individuals and as families, and to facilitate their active participation in all aspects of society throughout their journey with TSC and TAND.