1. MORTEMUS MORTality in Epilepsy Monitoring Unit Study USING IN-HOSPITAL PRE-SURGICAL MONITORING DATA TO ASSESS RISKS, MECHANISMS AND RISK FACTORS OF SUDDEN UNEXPECTED DEATH IN EPILEPSY (SUDEP) Proposal for an ILAE sponsored European study Philippe Ryvlin, Lyon Torbjörn Tomson, Stockholm

2. Why Epilepsy Surgery Patients? Population with highest risk Population with highest risk Population/situation with most and best data Population/situation with most and best data

3. Why collaboration? Because SUDEP is a rare event Because SUDEP is a rare event Broad collaboration is the only way to collect sufficient numbers Broad collaboration is the only way to collect sufficient numbers

4. MORTEMUS Objectives To quantify the risk of death, SUDEP, and “near SUDEP”, in patients with drug resistant partial epilepsy who have undergone long-term video-EEG monitoring To gather up to 20 cases of SUDEP / “near SUDEP” for whom concomitant video, EEG and EKG data will be available To gather up to 20 cases of SUDEP / “near SUDEP” for whom concomitant video, EEG and EKG data will be available To provide evidence regarding the respective role of cardiac vs. respiratory dysfunctions in the pathophysiology of SUDEP To provide evidence regarding the respective role of cardiac vs. respiratory dysfunctions in the pathophysiology of SUDEP To identify risk factors for SUDEP in patients with refractory epilepsy To identify risk factors for SUDEP in patients with refractory epilepsy

5. Objectives continued To evaluate the feasibility and rationale for launching a large scale European prospective study that aims to confirm the above retrospective data, and also to determine whether heart rate variability parameters can predict the risk of SUDEP To evaluate the feasibility and rationale for launching a large scale European prospective study that aims to confirm the above retrospective data, and also to determine whether heart rate variability parameters can predict the risk of SUDEP

6. MORTEMUS Methods To establish a network of collaborating epilepsy surgery centres in Europe, aiming at in total 3-4000 patient years of monitoring during the past 10 years To establish a network of collaborating epilepsy surgery centres in Europe, aiming at in total 3-4000 patient years of monitoring during the past 10 years Distribution of questionnaire regarding SUDEP or near- SUDEP cases during monitoring in these units Distribution of questionnaire regarding SUDEP or near- SUDEP cases during monitoring in these units Centralised analysis of all data (EEG, ECG, video etc) from SUDEP/near-SUDEP cases for a descriptive study Centralised analysis of all data (EEG, ECG, video etc) from SUDEP/near-SUDEP cases for a descriptive study Case-control study of SUDEP/near-SUDEP cases vs. Non-SUDEP epilepsy controls from the same monitoring unit Case-control study of SUDEP/near-SUDEP cases vs. Non-SUDEP epilepsy controls from the same monitoring unit

7. SUDEP under Monitoring SUDEP under Monitoring ”Cerebral Electrical Shutdown” ReferenceAge/sexMonitoringSeizureEEGECG Bird 1997 47/m Video/Intra cranial sGTCS Flat EEG Pulse artifacts 2 min Lee 1998 41/fVideo/scalpsGTCS Electro- cerebral silence bradycardia So 2000 (near- SUDEP) 20/fVideo/scalpsGTCS Apnea, marked suppresion Initially unimpaired McLean 2007 50/fAmb.EEG? Flat EEG Asystole after 57s