The international TAND consortium is collaborating with Esperity for the TANDem-2 project — bringing together researchers, clinicians, patient organisations, and technology partners to explore aspects of TSC-Associated Neuropsychiatric Disorders (TAND).

Within this collaboration, we developed the TAND Toolkit App, creating a digital entry point for families affected by Tuberous Sclerosis Complex (TSC). The app enables individuals with TSC and their caregivers to complete the TAND-SQ checklist themselves — identifying and quantifying TAND — and provides evidence-informed suggestions for additional support as well as practical tips to manage TAND at home.

The TANDem-2 project is led by Prof. Anna Jansen (Vrije Universiteit Brussel & University of Antwerp, Belgium) and Prof. Petrus de Vries (University of Cape Town, South Africa).

Through TANDem-2, families gain access to a quantified, self-complete TAND checklist, practical guidance via an in-app TAND toolkit, and consensus recommendations co-developed by families and experts. Beyond the app itself, the project aims to explore how TAND severity changes naturally over time, what predicts these changes, and how caregiver wellbeing might impact TAND severity.

The TAND consortium also hopes to test the acceptability, feasibility, and effectiveness of a brief intervention to support caregiver wellbeing. Ultimately, the project aims to build a sustainable international consortium to advance research, awareness, and care for TAND.

By bringing families, clinicians, and researchers together through digital tools, TANDem-2 is a meaningful step towards ensuring TAND is no longer overlooked.