International consensus recommendations for the identification and treatment of TSC-Associated Neuropsychiatric Disorders (TAND)

ICNC2024
Symposia:  Managing The Complexities of TSC - From mTOR Inhibition and CBD To Technology

International consensus recommendations for the identification and treatment of TSC-Associated Neuropsychiatric Disorders (TAND)
Petrus De Vries

Tuberous Sclerosis Complex (TSC) is associated with a wide range of physical manifestations for which clinical recommendations for diagnosis and management have been established. TSC is also associated with a wide range of TSC-Associated Neuropsychiatric Disorders (TAND) that are typically under-identified and under-treated. To date no international consensus recommendations for the diagnosis and management of TAND have been prepared.
TANDem is an international, interdisciplinary and participatory project with 24 consortium members, including TSC family representatives, from all World Health Organization (WHO) regions. Project aim 2 was generation of consensus recommendations for TAND. In the absence of internationally-adopted standard methodologies and checklists for the generation of clinical practice recommendations, we developed our own systematic procedure for evidence review and consensus-building.
At the heart of the consensus recommendations are ten core principles surrounded by cluster-specific recommendations for each of the seven natural TAND clusters identified in the literature and a set of wraparound psychosocial cluster recommendations. This presentation will summarise the process, key recommendations, and actions for implementation and dissemination.
The consensus recommendations should provide health, educational and social care teams, and families who live with TSC with a systematic framework to approach the identification and treatment of TAND.

Other Lectures in this symposium
Empowering Families Through Technology: a Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem)
Improving healthcare for Tuberous Sclerosis Complex (TSC): updated international consensus recommendations for diagnosis, surveillance and management of TSC and real-world implementation
New Developments in the Treatment of TSC-related Epilepsy and TSC-Associated Neuropsychiatric Disorders