In the first episode of TSC Now in 2025, host Dan Klein tackles the challenging topic of what happens when a clinical trial fails and how failed clinical trials inform future research in tuberous sclerosis complex (TSC).
Dan interviews Mary Kay Koenig, MD, Professor of Child Neurology and Associate Vice Chair for Clinical Research at University of Texas McGovern Medical School in Houston and Co-Director of the TSC Center of Excellence at the University of Texas Health Science Center at Houston. Dr. Koenig provides insights on what risks are involved in participating in a clinical trial and what questions caretakers should ask during the consenting process, how trials can fail and what happens after a trial ends, how families participating in a failed trial can continue to receive medication in certain situations, and how all trials, regardless of their result, help move our understanding of TSC forward.
Interested in learning more about TSC clinical trials? Learn more about available trials and how to enroll: https://www.tscalliance.org/get-involved/participate-in-research/
If you or your loved one is struggling to access medication you need please do not hesitate to reach out to our support navigators. You can email them at support@tscalliance.org or call our support line: 240-463-7250.
Subscribe to TSC Now: https://tsc-now.blubrry.net/subscribe-to-podcast/
Watch this episode of TSC Now on YouTube: https://youtu.be/YBQP534C75U
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