We advocate for a deliberate investment in collaborative, national or international efforts to rapidly and rigorously collect and share clinical data on patients with epilepsy, particularly those with rare genetic variants. Development of an infrastructure of clinical informatics tools that can plug into a national or international network for epilepsy centers could transform the field. A learning healthcare system model could provide the opportunity for natural history studies, disparities & healthcare delivery research, discovery of clinical biomarkers of disease progression and response to treatment, identify people with rare epilepsies for potential participation in treatment trials, etc. These priorities are critical as we move forward with disease-modifying therapies.
This approach has dramatically improved health outcomes for children with cancer, inflammatory bowel disease, and hypoplastic left heart syndrome. The epilepsy community is now poised to do the same.