Abstracts

Rationale: Management of refractory convulsive status epilepticus (RCSE) varies at different centers and from patient to patient within a given center. We aimed to establish a North-American multicenter network of tertiary referral hospitals to analyze RCSE management which could provide useful information on outcome and outcome predictors. Methods: Pediatric epileptologists frequently caring for children with RCSE first met at the Child Neurology Society Meeting and American Epilepsy Society meetings in 2010, and subsequently established monthly phone conferences in order to establish a research group on pediatric RCSE. Common inclusion criteria for RCSE included: 1) age 1 month to 21 years; 2) convulsive seizures at onset; and 3) failure of two or more antiepileptic drugs (AEDs) or requirement of any kind of continuous infusion of AEDs to abort seizures. We excluded patients with: 1) non-convulsive SE detected on EEG (without convulsive seizures at onset); and 2) non-convulsive status epilepticus and infrequent myoclonic jerks. Results: The network began with 8 centers in 2010 and presently comprises 11 tertiary epilepsy centers in the United States and Canada. The group meets monthly in highly-focused 30 minute phone conferences, and biannually in person. These meetings are attended by >75% of participants regularly. IRB approval was obtained from all sites. Funding was obtained from the Epilepsy Foundation of America. Data elements for status epilepticus were developed based on NINDS common data elements. A web-based interface based on the NINDS childhood absence epilepsy trial was developed to permit multi-center anonymized data entry. Data on demographics, comorbidities, semiology of the status epilepticus, AEDs required to stop the seizures, EEG features and complications of the status epilepticus and/or its treatment are being collected for every patient. Since October 2011 we prospectively enrolled 25 children with RCSE. We expect subject recruitment to continue until January 2013 to yield 50 subjects. We plan to perform detailed analysis on the use, timing, efficacy and adverse effects of AEDs in RCSE. Future collaboration may allow for the collection of biologic samples to determine genetic factors and provide data for interventional treatment trials. Conclusions: We have developed a North-American multicenter network of tertiary hospitals that care for children with RCSE. We are successfully enrolling patients prospectively. With further development and continued enrollment, this registry will allow us to compare differences across the 11 institutions. This will yield valuable data regarding the most effective RCSE treatment and monitoring strategies which can then be studied by the network as interventional treatment trials. Additionally, newly developing consortium links will permit investigation of genetic markers of SE susceptibility and outcome. This study may help in setting up prospective comparative efficacy studies on therapy of status epilepticus.