The TAND Consortium is an international group of TSC experts including researchers, clinicians and TSC family representatives. TANDem is an international multi-disciplinary mobile-health project to empower families and individuals who live with TSC around the world. In 2023, the consortium published International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) in the Journal of Neurodevelopmental Disorders.
They used a systematic procedure including evidence review and consensus-building to generate these recommendations. They consist of ten core principles relevant to anyone with TSC, as well as recommendations specific to each TAND cluster detailed below. The overarching recommendation is to ‘screen’ for TAND at least annually using the TAND Checklist, to ‘act’ using appropriate next steps for evaluation and treatment, and to ‘repeat’ the process to ensure early identification and early intervention with the most appropriate available support, including behavioral interventions and supports, psychological support, and medications if necessary.
Figure redrawn from de Vries et al., JNDD 2023 with permission from the authors.