US registry data says concern of vision loss as a result of taking vigabatrin is very low

Thank you to the Danish TSC association for inviting TSA to attend its family day. Dr Darcy Krueger, Director of the Tuberous Sclerosis Clinic, Associate Professor of Clinical Pediatrics and Neurology, and Associate Director of Research in Neurology at Cincinnati Children’s Hospital – who some of you will remember from our 2021 Conference – gave an important update on further research into the possible link between vigabatrin and vision problems. The research was conducted over 7 years and included over 9,000 patients. The good news is that the latest study confirms the results of previous studies and the US registry data says concern (ie risk of vision loss) is very low. Darcy and the team are currently writing up the research. We will provide a summary when it is published in 2025.