TSC Clinical Consensus Guidelines

TSC Clinical Consensus Guidelines

This course aims to give an overview of the importance of the International Tuberous Sclerosis Complex Diagnostic Criteria and Surveillance and Management Recommendations and how they can be implemented for TSC care.  

TSC is very complex, involving multiple organ systems. Its effects can change throughout a lifetime, and the need for specialists may vary. The TSC Clinical Consensus Guidelines were developed by experts in 14 countries to provide guidance about diagnosis, surveillance, and treatment for TSC and are viewed as the international gold-standard.  

The TSC Clinical Consensus Guidelines were developed by an international group of TSC medical experts. However, it is important that the guidelines are useful for TSC individuals and families. TSC organizations all over the world came together to discuss how these international guidelines can be practically implemented worldwide. A companion paper was published at the same time titled
"Beyond the Guidelines: How We Can Improve Healthcare for People with Tuberous Sclerosis Complex Around the World," which summarizes this.

We hope you will leave this course with a better understanding of the guidelines and how they can be used as a roadmap for coordinated TSC care. 

For those individuals who are newly diagnosed with TSC, we recommend checking out TSC Navigator for more resources and help. 

This course is intended to provide basic information about tuberous sclerosis complex (TSC). It is not intended to, nor does it, constitute medical or other advice. Participants are warned not to take any action regarding medical treatment or otherwise based on the information in this course without first consulting a physician. The TSC Alliance® does not promote or recommend any treatment, therapy, institution or healthcare plan. 

Kari Luther Rosbeck, President & CEO of TSC Alliance, gives a brief overview of the TSC Clinical Consensus Guidelines.

Learning objectives: 

By taking this course you will gain a better understanding of…
  1. The importance of the TSC Clinical Consensus Guidelines
  2. The various manifestations of TSC
  3. How to talk with your healthcare provider about surveillance, management and treatments for TSC
  4. Learn to advocate for comprehensive care coordination  

This course was made possible in part through a sponsorship from Nobelpharma.