International TSC Consensus Guidelines

Peer-Reviewed, Published TSC Clinical Consensus Articles

In July 2021, the International TSC Diagnostic Criteria and Surveillance and Management Recommendations were updated to reflect advances in knowledge and approval of new therapies. In addition, TSCi published a companion piece that examines the state of TSC care around the world, identifies gaps in TSC care and makes recommendations for how TSC organizations and key stakeholders can work together to overcome barriers in TSC care. You can access both publications below.

• Northrup, H., et al., Updated International Tuberous Sclerosis Complex Diagnostic Criteria and Surveillance and Management Recommendations Pediatric Neurology (July 2021)
• Stuart, C., et al., Beyond The Guidelines: How We Can Improve Healthcare For People With Tuberous Sclerosis Complex Around The World Pediatric Neurology (July 2021)

TAND Clinical Consensus Guidelines

In September 2023, the TAND Consortium  published consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND). You can access the publication below.

• de Vries, P., et al., International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) Journal of Neurodevelopmental Disorders (September 2023)

The following papers are available free of charge with open access to anyone in the world.  TSCi encourages sharing these articles with healthcare providers.

• Northrup, H., et al., Tuberous Sclerosis Complex Diagnostic Criteria Update: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference Pediatric Neurology (October 2013)
• Krueger, D.A., et al., Tuberous Sclerosis Complex Surveillance and Management: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference Pediatric Neurology (October 2013)
• Roth, J., et al., Subependymal Giant Cell Astrocytoma: Diagnosis, Screening, and Treatment.  Recommendations From the International Tuberous Sclerosis Complex Consensus Conference 2012 Pediatric Neurology (December 2013)
• Leclezio L et al. Pilot Validation of the Tuberous Sclerosis-Associated Neuropsychiatric Disorders (TAND) Checklist, Pediatric Neurology (January 2015)
• deVries PJ et al. Tuberous Sclerosis Associated Neuropsychiatric Disorders (TAND) and the TAND Checklist, Pediatric Neurology (January 2015)
• Hinton RB et al. Cardiovascular manifestations of tuberous sclerosis complex and summary of the revised diagnostic criteria and surveillance and management recommendations from the international tuberous sclerosis consensus group. J Am Heart Assoc. (Nov 2014).
• Teng JMC et al. Dermatologic and Dental Aspects of the 2012 International Tuberous Sclerosis Complex Consensus Statements, JAMA Dermatology (October 2014)