Development of the TAND-SQ Checklist

One of the main aims of the TANDem Project was to develop a self-report, quantified TAND Checklist for completion by individuals with TSC and/or their families to help identify and track changes in TAND. We are very happy to report that this TAND-SQ Checklist has now been developed and published as an open access paper in the Journal of Pediatric Neurology. The paper version of the TAND-SQ Checklist is freely available for download in the published paper.

The publication describes the process we followed in developing the TAND-SQ, perceptions of feasibility and acceptability of the near-final version of the checklist by individuals and families living with TSC, and the final changes made as a result of this feedback. As a next step, we are examining internal and external validation of the checklist and building the checklist into a smartphone app that links the TAND cluster profiles generated by the checklist to evidence-informed consensus recommendations and practical strategies for managing TAND.