Tuberous Sclerosis Complex - Diagnosis and Management

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Editorial

05 October 2021

Editorial: Tuberous Sclerosis Complex – Diagnosis and Management

Sergiusz Jozwiak

and

Paolo Curatolo

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3 citations

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Sergiusz Jozwiak

Children's Memorial Health Institute (IPCZD)

University of Rome Tor Vergata

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There is common agreement that there are still gaps in understanding the course of Tuberous Sclerosis Complex (TSC) manifestations and their prognostic role, rare symptoms and co-morbidities, interventions, treatments, and their outcomes, and Quality of Life (QoL). TuberOus SClerosis registry to increAse disease awareness (TOSCA), this largest multicentered, multinational registry of the 2211 TSC patients enrolled from 31 countries worldwide, was designed to address many of these gaps by collecting data from patients across many countries worldwide.

The results of TOSCA will assist in filling the gaps in understanding the natural history of TSC and will help in planning better management and surveillance strategies. Comprehensive surveillance will lead to more pro-active and pre-emptive treatment and better outcomes in future. The data collected might inform patient's treatment standards and promote research in TSC.

The Research Topic will include papers reporting results of this TOSCA analysis, but also welcomes other manuscripts covering TSC.

We acknowledge the funding of some of the manuscripts submitted to this Research Topic by the company Novartis Oncology. We hereby state publicly that Novartis Oncology has had no editorial input in articles included in this Research Topic, thus ensuring that all aspects of this Research Topic are evaluated objectively, unbiased by any specific policy or opinion of Novartis Oncology

There is common agreement that there are still gaps in understanding the course of Tuberous Sclerosis Complex (TSC) manifestations and their prognostic role, rare symptoms and co-morbidities, interventions, treatments, and their outcomes, and Quality of Life (QoL). TuberOus SClerosis registry to increAse disease awareness (TOSCA), this largest multicentered, multinational registry of the 2211 TSC patients enrolled from 31 countries worldwide, was designed to address many of these gaps by collecting data from patients across many countries worldwide.

The results of TOSCA will assist in filling the gaps in understanding the natural history of TSC and will help in planning better management and surveillance strategies. Comprehensive surveillance will lead to more pro-active and pre-emptive treatment and better outcomes in future. The data collected might inform patient's treatment standards and promote research in TSC.

The Research Topic will include papers reporting results of this TOSCA analysis, but also welcomes other manuscripts covering TSC.

We acknowledge the funding of some of the manuscripts submitted to this Research Topic by the company Novartis Oncology. We hereby state publicly that Novartis Oncology has had no editorial input in articles included in this Research Topic, thus ensuring that all aspects of this Research Topic are evaluated objectively, unbiased by any specific policy or opinion of Novartis Oncology

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Editors

Sergiusz Jozwiak

Children's Memorial Health Institute (IPCZD)

University of Rome Tor Vergata

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87,791 Total views

64,071 Article views

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1,532 Topic views

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Frontiers in Neurology

Pediatric Neurology

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Frontiers in Pediatrics

Pediatric Neurology

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