TOSCA – first international registry to address knowledge gaps in the natural history and management of tuberous sclerosis complex.

Autor:	Kingswood, John C, Bruzzi, Paolo, Curatolo, Paolo, de Vries, Petrus J, Fladrowski, Carla, Hertzberg, Christoph, Jansen, Anna C, Jozwiak, Sergiusz, Nabbout, Rima, Sauter, Matthias, Touraine, Renaud, O’Callaghan, Finbar, Zonnenberg, Bernard, Crippa, Stefania, Comis, Silvia, d’Augères, Guillaume Beaure, Belousova, Elena, Carter, Tom, Cottin, Vincent, Dahlin, Maria
Předmět:	TUBEROUS sclerosis KNOWLEDGE gap theory NATURAL history EVIDENCE-based medicine QUALITY of life THERAPEUTICS
Zdroj:	Orphanet Journal of Rare Diseases; 2014, Vol. 9 Issue 1, p182-190, 9p, 3 Diagrams, 2 Charts, 1 Map
Abstrakt:	The article focuses on the TuberOus SClerosis registry to increase disease Awareness (TOSCA). It states TOSCA is an international registry addressing knowledge gaps in the management and natural history of tuberous sclerosis complex (TSC) and assesses interventions, manifestations, and outcomes in TSC patients. It mentions its objectives include contributing to an evidence-base for disease assessment and therapy, evaluating TSC patient quality of life, and recording patient information.
Databáze:	Complementary Index
Externí odkaz:	Zobrazit plný text záznamu Full text from SpringerLink