Clinical Research Consortium
The execution of clinical studies requires extensive planning, cooperation, and collaboration to protect the safety of participants and the integrity of valuable data. To initiate and implement clinical studies more quickly and effectively, researchers from five TSC Clinics together with the TS Alliance formed the TSC Clinical Research Consortium in 2012.
Current Clinical Studies
- Potential EEG Biomarkers and Antiepileptogenic Strategies for Epilepsy in TSC
- Early Biomarkers of Autism in Infants with TSC
- Autism Spectrum Disorder (ASD) and Intellectual Disability (ID) Determinants in Tuberous Sclerosis Complex (TSC)
- Preventing Epilepsy using Vigabatrin in Infants with TSC (PREVeNT)
Participating Sites and Principal Investigators
- Boston Children’s Hospital (Mustafa Sahin, MD PhD)
- Children’s Hospital Orange County (Mary Zupanc, MD)
- Children’s Hospital Philadelphia (Katherine Taub, MD)
- Children’s National Health System (William McClintock, MD)
- Cincinnati Children’s Hospital Medical Center (Darcy Krueger, MD, PhD)
- Duke University (Klaus Werner, MD, PhD)
- Minnesota Epilepsy Group (Michael Frost, MD)
- Mount Sinai Health System (Steven Wolf, MD)
- Stanford University (Brenda Porter, MD. PhD)
- University of Alabama at Birmingham (Martina Bebin, MD, MPA)
- University of California, Los Angeles (Joyce Wu, MD)
- University of Texas Health Science Center at Houston (Hope Northrup, MD and Mary Kay Koenig, MD)
- Washington University St. Louis (Michael Wong, MD, PhD)
Investigators and sponsors from other institutions are invited to contact Dr. Steve Roberds at the TS Alliance via firstname.lastname@example.org or any principal investigator at participating sites to find out how to partner with the TSC Clinical Research Consortium.
Thanks to generous donations from the Cowlin Family Fund, the TS Alliance supported early establishment of the data coordinating center and dedicated clinical coordinator time in 2012 and 2013 to help accelerate launch of the first studies. Clinical studies have been funded primarily by the National Institutes of Health with supplemental funding from the TS Alliance.