New TSC research trial now recruiting in Australia

We are delighted to let you know that our friends at Sydney Children’s Hospital in Randwick are now recruiting for the TSC-STEPS research trial (formerly known as STOP2).

The purpose of this ground-breaking research is to learn more about the safety and efficacy of early sirolimus treatment to prevent or delay seizure onset in infants diagnosed with TSC.  Infants 0 to 6 months old who are diagnosed with TSC and have no history of seizures may be eligible to participate.

If needed, TSA can offer some assistance with travel and accommodation costs for families outside of Sydney, including interstate families who participate in the trial.

What

The purpose of this research study is to learn more about the safety and efficacy of early sirolimus treatment to prevent or delay seizure onset in infants diagnosed with Tuberous Sclerosis Complex (TSC), a genetic disorder where epilepsy is common.

Who

Infants 0 to 6 months old who are diagnosed with TSC and have no history of seizures may be eligible to participate.

Compensation

There is no compensation for your participation in this study. However, there may be limited travel funding available.

Details

For more information, visit: www.clinicaltrials.gov (identifier NCT05104983)

Or contact:

Dr Denise Chan, [email protected]