Patient Engagement
Partnership for Tuberous Sclerosis Complex (TSC)
TSC Alliance
The TSC Alliance aims to find a cure while also improving the quality of life for those affected by Tuberous Sclerosis Complex. Their vision is delivered through support of accelerating research, improving access and quality of care, providing support to families, educating, and strengthening the TSC community.
CLINICAL TRIAL
Basimglurant in Children and Adolescents With TSC
PI: Mustafa Sahin MD, PhD | Clinical Drug Trial — NCT05059327 >
Patient Advocacy Group Partner: TSC Alliance
CLINICAL TRIAL
Stopping TSC Onset and Progression 2B: Sirolimus TSC Epilepsy Prevention Study (TSC-STEPS)
PI: Mustafa Sahin MD, PhD | Clinical Drug Trial — NCT05104983 >
Patient Advocacy Group Partner: TSC Alliance
CLINICAL TRIAL
Topical Sirolimus Ointment for Cutaneous Angiofibromas in Subjects With Tuberous Sclerosis Complex
PI: Mustafa Sahin MD, PhD | Clinical Drug Trial — NCT03363763 >
Patient Advocacy Group Partner: TSC Alliance
CLINICAL TRIAL
Preventing Epilepsy Using Vigabatrin In Infants With Tuberous Sclerosis Complex
PI: Mustafa Sahin MD, PhD | Clinical Drug Trial — NCT02849457 >
Patient Advocacy Group Partner: TSC Alliance
CLINICAL TRIAL
Adjunctive Ganaxolone Treatment (Part A) in TSC Followed by Long-term Treatment (Part B) (TSC)
PI: Jurriaan Peters, MD, PhD | Clinical Drug Trial — NCT04285346 >
Patient Advocacy Group Partner: TSC Alliance
CLINICAL TRIAL
Autism Spectrum Disorder (ASD) and Intellectual Disability (ID) Determinants in Tuberous Sclerosis Complex (TSC)
PI: Mustafa Sahin MD, PhD | Natural History Study — NCT02461459 >
Patient Advocacy Group Partner: TSC Alliance