The academic journal, Annals of Neurology, has recently accepted a paper by researchers at Texas Children’s Hospital, Baylor College of Medicine and Cincinnati Children’s Hospital. This small study shows promising results in a small number of TSC patients being treated with Everolimus for Epilepsy. This paper has resulted in some very positive media coverage.
Link to the study
Krueger, D.A., et al., Everolimus treatment of refractory epilepsy in tuberous sclerosis complex. Annals of Neurology, 2013
You can read the abstract of the article here: https://onlinelibrary.wiley.com/doi/10.1002/ana.23960/abstract
You can read some of the articles written about this study here:
The following promotional video has been produced by Texas Children’s Hospital:
What does this study mean to TSC affected families in Australia and New Zealand?
This study only included 20 patients and did not include a comparrison group, that is, all 20 patients were treated with Everolimus. The next step is a larger, worldwide clinical trial that is already being planned. This study will include several sites in Australasia. If this larger study shows positive results, this new medicine may be approved in the future to treat Epilepsy associated with Tuberous Sclerosis in Australia and New Zealand.
You can read more about the larger study at https://www.clinicaltrials.gov/ct2/show/NCT01713946
If you have any questions about how this information may apply to your individual circumstance, you should discuss this with your own doctor.