MORTEMUSMORTality 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, LyonTorbjörn Tomson, Stockholm

Why Epilepsy Surgery Why Epilepsy Surgery Patients?Patients?

Population with highest riskPopulation with highest risk Population/situation with most and Population/situation with most and

best databest data

Why collaboration?Why collaboration?

Because SUDEP is a rare eventBecause SUDEP is a rare event Broad collaboration is the only way Broad collaboration is the only way

to collect sufficient numbersto collect sufficient numbers

MORTEMUS ObjectivesMORTEMUS 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 To gather up to 20 cases of SUDEP / “near SUDEP” for whom concomitant video, EEG and EKG data will be whom concomitant video, EEG and EKG data will be availableavailable

To provide evidence regarding the respective role of To provide evidence regarding the respective role of cardiac vs. respiratory dysfunctions in the cardiac vs. respiratory dysfunctions in the pathophysiology of SUDEPpathophysiology of SUDEP

To identify risk factors for SUDEP in patients with To identify risk factors for SUDEP in patients with refractory epilepsyrefractory epilepsy

Objectives continuedObjectives continued

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

MORTEMUS MethodsMORTEMUS Methods

To establish a network of collaborating epilepsy surgery To establish a network of collaborating epilepsy surgery centres in Europe, aiming at in total 3-4000 patient years centres in Europe, aiming at in total 3-4000 patient years of monitoring during the past 10 yearsof monitoring during the past 10 years

Distribution of questionnaire regarding SUDEP or near-Distribution of questionnaire regarding SUDEP or near-SUDEP cases during monitoring in these unitsSUDEP cases during monitoring in these units

Centralised analysis of all data (EEG, ECG, video etc) Centralised analysis of all data (EEG, ECG, video etc) from SUDEP/near-SUDEP cases for a descriptive studyfrom SUDEP/near-SUDEP cases for a descriptive study

Case-control study of SUDEP/near-SUDEP cases vs. Case-control study of SUDEP/near-SUDEP cases vs. Non-SUDEP epilepsy controls from the same monitoring Non-SUDEP epilepsy controls from the same monitoring unitunit

SUDEP under MonitoringSUDEP under Monitoring ”Cerebral Electrical

Shutdown”ReferenceReference Age/Age/

sexsexMonitorinMonitoringg

SeizurSeizuree

EEGEEG ECGECG

Bird 1997Bird 1997 47/m47/m Video/Video/IntracraniIntracranialal

sGTCSsGTCS Flat EEGFlat EEG Pulse Pulse artifacts 2 artifacts 2 minmin

Lee 1998Lee 1998 41/f41/f Video/Video/scalpscalp

sGTCSsGTCS Electro-Electro-cerebral cerebral silencesilence

bradycardibradycardiaa

So 2000 So 2000 (near-(near-SUDEP)SUDEP)

20/f20/f Video/Video/scalpscalp

sGTCSsGTCS Apnea, Apnea, marked marked suppresiosuppresionn

Initially Initially unimpaireunimpairedd

McLean McLean 20072007

50/f50/f Amb.EEGAmb.EEG ?? Flat EEGFlat EEG Asystole Asystole after 57safter 57s