As part of the Dravet Syndrome Ireland series of live virtual talks for parents. These talks are open to all parents of children with complex genetic epilepsies and are free of charge.
Prof. Norman Delanty, Consultant Neurologist, and Future Neuro Research Nurse Sarah-Jane Byrne, introduced parents to the Epilepsy-Associated Gene-Ready Register (EAGER).
The rare disease epilepsy register for genetic epilepsies being developed at the Science Foundation Ireland (SFI) FutureNeuro Research Centre, curated by RCSI. The aim of the register is to bring together a list of individuals (and families) with complex epilepsy with known causative genetic mutations. It is envisaged the register will be a link between individuals affected, families, support organisations and advocacy groups, clinicians, and biopharma to enable future precision medicine trials in individuals with specific mutations.