In this issue we are delighted to include a link to a recording of an interview with Dr Kate Riney on the EPISTOP research trial, which is one of the most significant international TSC research projects in recent times. We also include summaries of two other recent research studies which we think will be of interest to our TSC community in Australia.
The EPISTOP Study
The EPISTOP study was a multi-centre study across nine sites in Europe and one site in Queensland, Australia. In this interview Dr Kate Riney tells us more about the study and its significant outcomes. See https://tsa.org.au/the-epistop-study-an-interview-with-dr-kate-riney/
The metformin in tuberous sclerosis (MiTS) study
Metformin is a commonly used medication in the management of diabetes. It inhibits mTOR pathways which is also a treatment option in TSC. This study looked at the potential use of metformin as a treatment option for TSC. See https://tsa.org.au/the-metformin-in-tuberous-sclerosis-mits-study/
Epilepsy in adult patients with TSC
Relatively little is known about the evolution of epilepsy in adults affected by TSC. This was a study of epilepsy in 257 adults affected by TSC in Milan, Italy. See https://tsa.org.au/epilepsy-in-adult-patients-with-tsc/
This information is intended to provide some insights into recent TSC-related research. It is not intended to, and it should not, constitute medical or other advice. Readers are warned not to take any action without first seeking medical advice.
Citations (and links where possible) to the full research articles/papers are included for those who would like to know more. TSA’s nurse service is also available and offers a free, confidential information and support service which provides TSC information and links to practical support. You can contact Kim, the TSA nurse, by phoning 1300 733 435, emailing [email protected] or visiting https://tsa.org.au/tsa-nurse/