Increasing Access to Clinical Trials and New Treatments Across the DEEs

Join us for a conversation about a promising model of clinical trials for new epilepsy treatments that accelerate access to the wider community of DEEs. The “basket trial” design is used in clinical trials for medicines aiming to treat symptoms of those living with DEEs, including seizures. This broad approach is different than the current standard clinical trial design singling out individual disorders, and would mean increased access to clinical research for families interested in participating. With this more inclusive model, treatments approved using this method could include DEEs in the “label” (i.e. approved by the FDA for use), reducing the need for families to have to argue with doctors and insurance companies for the use of drugs off-label. Join us to learn more about this model in our discussion with Longboard Pharmaceuticals who has applied this model in their innovative Phase 2 trial design that was inclusive of all DEEs. DEE-P Connections is actively advocating with the FDA to be more supportive of pharmaceutical companies about this model and we welcome more families to help speak out about the need to accelerate improved treatments for the dozens of rare epilepsies.

This session is being held in partnership with the Rare Epilepsy Network.