TSC research including Research Round Up – a quarterly summary of some of the most important TSC-related research from Australia and around the world.
An exciting opportunity for people with TSC in Australia to help researchers discover biomarkers of TSC, test potential drug treatments, and determine why TSC is so different from person to person.
In this issue of Research Round Up we have included a summary on the long-term safety of everolimus and a study which evaluated safety and anti-epileptic efficacy of Rapamycin treatment in paediatric patients with drug-resistant TSC- associated epilepsy.
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
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
In this issue we include summaries of recent research papers on two of the therapies that may be used to treat TSC-related drug resistant epilepsy.
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
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
Here is all the latest TSC research for January 2022.
Nearly 90% of individuals affected by TSC experience a wide range of neuropsychiatric symptoms that fall under the umbrella of TAND, TSC Associated Neuropsychiatric Disorders. These include behavioural, psychiatric, intellectual, academic, neuropsychological and psychosocial issues. Autism spectrum disorder (ASD) is … Read More
