Research Round Up October 2022
In this issue we have included two recent studies on developmental outcomes in infants that we think will be of interest to many of you.
Prenatal diagnosis and intervention in children with TSC
Purpose of this study This study aimed to assess whether prenatal diagnosis of TSC and early intervention are correlated with better developmental and epilepsy-related outcomes than postnatal diagnosis. About this study This was a retrospective, single-centre study of children with … Read More
Epilepsy and language development in 8–36 month-old children living with TSC
Context Previous studies have estimated the incidence of Autism Spectrum Disorder (ASD) to be 17%-61% in children with TSC, and the incidence of epilepsy to be 70%-90%. Several studies suggest 60%-80% of people with TSC experience their first seizure within … Read More
Antiepileptic effect and safety profile of Rapamycin in paediatric patients with TSC
About this study Treatment with mTOR pathway inhibitors is important in drug resistant epilepsy (DRE). This study sought to evaluate the safety and efficacy of 12 months of Rapamycin treatment in 32 paediatric patients aged from 11 months to 14 … Read More
Congratulations to Kathryn Santamaria
TSA is delighted to announce that Kathryn Santamaria, Epilepsy Nurse Consultant at Royal Children’s Hospital in Melbourne is the winner of the 2022 Elizabeth Pinkerton Memorial Award. This award is given annually by TSA to a health professional in recognition … Read More
Real-world evidence study on the long-term safety of everolimus in patients with TSC
About this study The TuberOus SClerosis registry to increase disease Awareness (TOSCA) Post-Authorization Safety Study (PASS) was a non-interventional, multicenter, safety study that assessed the long-term safety of everolimus in patients with TSC in the European Union. The secondary aims … Read More
Zoom Discussion about the Health Care of Adults living with TSC
TSA is hosting a discussion about the health care care of adults living with TSC on Wednesday 14 September 2022 at 7pm AEST We know that the often fragmented nature of health care for adults living with TSC continues to … Read More
Vagus nerve stimulation (VNS) and drug-resistant epilepsy: a meta-analysis
Many children are affected by drug-resistant epilepsy (DRE). Drug-resistant epilepsy can cause increased mortality, cognitive impairment/developmental delays and poorer quality of life. It is therefore important to control seizures to reduce developmental delays in paediatric epilepsy. Seizure control may be … Read More
Expert advice for prescribing cannabis medicines for patients with epilepsy
Approximately 75% – 90% of individuals with TSC will have epilepsy at some point in their lives. There is renewed interest in the therapeutic benefits of cannabis medications, especially for individuals affected by treatment-resistant epilepsy, however clear prescribing guidelines for … Read More
Thanks Kim and Welcome Katrina!
This is Kim Kerin-Ayres’ final week with TSA. We would like to thank Kim, who has been our Telehealth Nurse since 2019, for the fabulous support she has provided to everyone in our TSC Community. We feel lucky to have … Read More