- Lectures / Webinars
- Empowering Families Through Technology: a Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem)
Empowering Families Through Technology: a Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem)
This content is only available for our subscribers. Please click here to subscribe to a subscription plan for unrestricted access.
ICNC2024
Symposia: Managing The Complexities of TSC - From mTOR Inhibition and CBD To Technology
Empowering Families Through Technology: a Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem)
Tosca Heunis
TSC-Associated Neuropsychiatric Disorders (TAND) significantly impact the mental health and wellbeing of individuals with TSC and their caregivers around the globe, especially in low-and-middle-income countries. This project was developed in partnership with families to reduce the TAND identification and treatment gap through the use of technology. The project aims were 1) the development and validation of a self-report quantified version of the TAND Checklist (TAND-SQ) and building it into a mobile application, 2) generation of consensus clinical recommendations for the identification and treatment of TAND, to be incorporated as a TAND toolkit in the app, and 3) establishment of a global TAND consortium.
Development of the TAND-SQ Checklist, the TAND App, consensus recommendations and the TAND toolkit was a highly iterative and participatory process that incorporated 24 consortium members including family representatives, technology and clinical experts from all WHO regions.
We will present key findings across the project aims, focusing on how technology was used in a participatory way to empower families across the globe.
The TANDem project has the potential to transform the global TSC community by empowering families living with TSC through an easily accessible digital solution to allow them to document their own TAND needs and link these to an evidence-informed toolkit to enhance personalised healthcare.
Other Lectures in this symposium
New Developments in the Treatment of TSC-related Epilepsy and TSC-Associated Neuropsychiatric Disorders
Improving healthcare for Tuberous Sclerosis Complex (TSC): updated international consensus recommendations for diagnosis, surveillance and management of TSC and real-world implementation
International consensus recommendations for the identification and treatment of TSC-Associated Neuropsychiatric Disorders (TAND)