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

Authors :
UCL - SSS/IONS/NEUR - Clinical Neuroscience
UCL - (MGD) Service de neurologie
Bergin, Peter S
Beghi, Ettore
Sadleir, Lynette G
Brockington, Alice
Tripathi, Manjari
Richardson, Mark P
Bianchi, Elisa
Srivastava, Kavita
Jayabal, Jayaganth
Legros, Benjamin
Ossemann, Michel
McGrath, Nicole
Verrotti, Alberto
Tan, Hui Jan
Beretta, Simone
Frith, Richard
Iniesta, Ivan
Whitham, Emma
Wanigasinghe, Jithangi
Ezeala-Adikaibe, Birinus
Striano, Pasquale
Rosemergy, Ian
Walker, Elizabeth B
Alkhidze, Maia
Rodriguez-Leyva, Ildefonso
Ramírez González, Jose Alfredo
D'Souza, Wendyl J
EpiNet Study Group
UCL - SSS/IONS/NEUR - Clinical Neuroscience
UCL - (MGD) Service de neurologie
Bergin, Peter S
Beghi, Ettore
Sadleir, Lynette G
Brockington, Alice
Tripathi, Manjari
Richardson, Mark P
Bianchi, Elisa
Srivastava, Kavita
Jayabal, Jayaganth
Legros, Benjamin
Ossemann, Michel
McGrath, Nicole
Verrotti, Alberto
Tan, Hui Jan
Beretta, Simone
Frith, Richard
Iniesta, Ivan
Whitham, Emma
Wanigasinghe, Jithangi
Ezeala-Adikaibe, Birinus
Striano, Pasquale
Rosemergy, Ian
Walker, Elizabeth B
Alkhidze, Maia
Rodriguez-Leyva, Ildefonso
Ramírez González, Jose Alfredo
D'Souza, Wendyl J
EpiNet Study Group
Source :
Epilepsia Open, Vol. 2, no.1, p. 20-31 (2017)
Publication Year :
2017

Abstract

EpiNet 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. Physicians 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. Between 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. We 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 tri

Details

Database :
OAIster
Journal :
Epilepsia Open, Vol. 2, no.1, p. 20-31 (2017)
Notes :
English
Publication Type :
Electronic Resource
Accession number :
edsoai.on1130452619
Document Type :
Electronic Resource