Measuring Health-Related Quality of Life in Tuberous Sclerosis Complex - Psychometric Evaluation of Three Instruments in Individuals With Refractory Epilepsy

• Main Authors: Petrus J. de Vries (Author), David N. Franz (Author), Paolo Curatolo (Author), Rima Nabbout (Author), Maureen Neary (Author), Fabian Herbst (Author), Kate Sully (Author), Elaine Brohan (Author), Bryan Bennett (Author), John A. Lawson (Author)
• Format: Book
• Published: Frontiers Media S.A., 2018-08-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Tuberous sclerosis complex (TSC) is a rare genetic disease associated with significant disease burden and considerable impact on health-related quality of life (HRQL). Currently no disease-specific clinical outcome assessments evaluate HRQL in individuals with TSC. A multi-center phase III study EXI...