EpiNet as a way of involving more physicians and patients in epilepsy research: Validation study and accreditation process

Abstract

SummaryObjectiveEpiNet was established to encourage epilepsy research. EpiNet is used for multicenter cohort studies and investigator‐led trials. Physicians must be accredited to recruit patients into trials. Here, we describe the accreditation process for the EpiNet‐First trials.MethodsPhysicians with an interest in epilepsy were invited to assess 30 case scenarios to determine the following: whether patients have epilepsy; the nature of the seizures (generalized, focal); and the etiology. Information was presented in two steps for 23 cases. The EpiNet steering committee determined that 21 cases had epilepsy. The steering committee determined by consensus which responses were acceptable for each case. We chose a subset of 18 cases to accredit investigators for the EpiNet‐First trials. We initially focused on 12 cases; to be accredited, investigators could not diagnose epilepsy in any case that the steering committee determined did not have epilepsy. If investigators were not accredited after assessing 12 cases, 6 further cases were considered. When assessing the 18 cases, investigators could be accredited if they diagnosed one of six nonepilepsy patients as having possible epilepsy but could make no other false‐positive errors and could make only one error regarding seizure classification.ResultsBetween December 2013 and December 2014, 189 physicians assessed the 30 cases. Agreement with the steering committee regarding the diagnosis at step 1 ranged from 47% to 100%, and improved when information regarding tests was provided at step 2. One hundred five of the 189 physicians (55%) were accredited for the EpiNet‐First trials. The kappa value for diagnosis of epilepsy across all 30 cases for accredited physicians was 0.70.SignificanceWe have established criteria for accrediting physicians using EpiNet. New investigators can be accredited by assessing 18 case scenarios. We encourage physicians with an interest in epilepsy to become EpiNet‐accredited and to participate in these investigator‐led clinical trials.

Status epilepticus in Auckland, New Zealand: Incidence, etiology, and outcomes

“…11 The EpiNet study group was established to provide a platform to undertake multicenter collaborative research studies in epilepsy. 13,14 We undertook a population-based epidemiological incidence study of SE in greater Auckland, New Zealand (population = 1.614 million), 15 using the EpiNet platform, with comprehensive data collection based on the new ILAE SE classification. 16 We also compared population incidence using previous ILAE classifications.…”

EpiNet study of incidence of status epilepticus in Auckland, New Zealand: Methods and preliminary results

“…8,9 The EpiNet-First trials of first antiepileptic drug therapy in people with newly diagnosed epilepsy are currently underway. 8,9 The EpiNet-First trials of first antiepileptic drug therapy in people with newly diagnosed epilepsy are currently underway.…”

“…The EpiNet project was commenced by the New Zealand chapter of the International League Against Epilepsy (ILAE) to undertake observational studies and pragmatic trials in epilepsy. 8,9 The EpiNet-First trials of first antiepileptic drug therapy in people with newly diagnosed epilepsy are currently underway. 9,10 The goal of EpiNet is to facilitate investigator-led collaborative research in epilepsy while simultaneously providing an online clinical record for each patient.…”

“…8,9 The EpiNet-First trials of first antiepileptic drug therapy in people with newly diagnosed epilepsy are currently underway. 9,10 The goal of EpiNet is to facilitate investigator-led collaborative research in epilepsy while simultaneously providing an online clinical record for each patient. 9 Details regarding seizure types and frequency, epilepsy syndrome, etiology, investigations, and drug history are recorded in a secure online patient database.…”

“…9,10 The goal of EpiNet is to facilitate investigator-led collaborative research in epilepsy while simultaneously providing an online clinical record for each patient. 9 Details regarding seizure types and frequency, epilepsy syndrome, etiology, investigations, and drug history are recorded in a secure online patient database. Information is primarily collected via drop-down menus, with some free text options.…”