EpiNet as a way of involving more physicians and patients in epilepsy research: Validation study and accreditation process. Issue 1 (3rd January 2017)

• Record Type: Journal Article
• Authors: 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.
• Other Names: Calle Analía investigator.; Palacios Claudio investigator.; Cairns Anita investigator.; Carney Patrick investigator.; Craig Donald investigator.; Gill Deepak investigator.; Gupta Sachin investigator.; Lander Cecilie investigator.; Laue-Gizzi Hanka investigator.; Hitchens Natalie investigator.; Kiley Michelle investigator.; Lawn Nicholas investigator.; Reyneke Elizabeth investigator.; Riney Kate investigator.; Tan Meng investigator.; Tan Michael investigator.; Thieban Mark investigator.; Wong Chong investigator.; van Rijckevorsel Germain investigator.; Ferrari Strang Ana Gabriela investigator.; Gifoni Angela investigator.; Helio Linden investigator.; Monnerat Bruno investigator.; Brna Paula investigator.; Donner Elizabeth investigator.; Jacques Stephanie investigator.; Jette Nathalie investigator.; McLachlan Richard investigator.; Mohamed Ismail investigator.; Tran Thi Phuoc Yen investigator.; Bo Xiao investigator.; Fan Song investigator.; Guang Yang investigator.; Li Ming investigator.; Wang Kang investigator.; Zhang Shouwen investigator.; Ladino Lady investigator.; Christensen Jakob investigator.; Kӧlmel Margarethe Sophie investigator.; Nikanorova Marina investigator.; Uusitalo Annukka investigator.; Vieira Paivi investigator.; Auvin Stephane investigator.; Ediberidze Tamar investigator.; Gogatishvili Nino investigator.; Jishkariani Tamar investigator.; Dennig Dieter investigator.; Grimmer Anja investigator.; Michaelis Rosa investigator.; Schubert‐Bast Susanne investigator.; Stephani Caspar investigator.; Stodieck Stefan investigator.; Vollbrandt Martin investigator.; Zellner Andreas investigator.; Zafeiriou Dimitrios investigator.; Fogarasi Andras investigator.; Halasz Peter investigator.; Chaurasia Rameshwar Nath investigator.; Jain Satish investigator.; Nair Raj investigator.; Passi Pravar investigator.; Rajadhyaksha Surekha investigator.; Sattaluri Sita Jayalakshmi investigator.; Shah Harshuti investigator.; Udani Vrajesh investigator.; Costello Daniel investigator.; Aguglia Umberto investigator.; Bartocci Arnaldo investigator.; Benna Paolo investigator.; Ferlazzo Edoardo investigator.; Laino Daniela investigator.; Spalice Alberto investigator.; Zanchi Clara investigator.; Ali Amza investigator.; Lim Kheng Seang investigator.; Ramirez Alfredo investigator.; Anderson Neil investigator.; Barber Alan investigator.; Cariga Pietro investigator.; Cleland James investigator.; Child Nicholas investigator.; Davis Suzanne investigator.; Dayal Viswas investigator.; Dickson Cameron investigator.; Doran John investigator.; Duncan Roderick investigator.; Giri Pratima investigator.; Herd Michael investigator.; Hutchinson David investigator.; Jones Bethany investigator.; Kao Justin investigator.; Kilfoyle Dean investigator.; Mottershead John investigator.; Muir Colette investigator.; Nolan Melinda investigator.; Pereira Jennifer investigator.; Ranta Anna investigator.; Sadani Sneha investigator.; Simpson Mark investigator.; Spooner Claire investigator.; Timmings Paul investigator.; Walker Elizabeth investigator.; Wei Diana investigator.; Willoughby Ernest investigator.; Wong Edward investigator.; Wu Teddy investigator.; Olusola Talabi investigator.; Mahmud Hiba investigator.; Mogul Zarine investigator.; Espinoza Julio investigator.; Vizarreta Jose Hernandez investigator.; Baeta Elia Maria investigator.; Teotónio Rute investigator.; Jocic‐Jakubi Bosanka investigator.; Lukic Stevo investigator.; Korošec Marko investigator.; Zgur Tomaz investigator.; Eguílaz María Gómez investigator.; Asztely Fredrik investigator.; Sithinamsuwan Pasiri investigator.; Anderson Joseph investigator.; Auce Pauls investigator.; Desurkar Archana investigator.; Hamandi Khalid investigator.; Kelso Andrew investigator.; Sanchez Violeta investigator.; Sidra Aurangzeb investigator.; Smith Phil investigator.; Wehner Tim investigator.; Winston Gavin investigator.; Andrade Edgard investigator.; Bensalem-Owen Meriem investigator.; Boudreau Michelle investigator.; Caller Tracie investigator.; Chapman Kevin investigator.; Chari Geetha investigator.; Davis Kathryn investigator.; Droker Brian investigator.; El-Hagrassy Mirret investigator.; Eliashiv Dawn investigator.; Eze Chigolum investigator.; Heck Christi investigator.; Kabir Arif investigator.; Kolesnik Dmitriy investigator.; Lam Alice investigator.; Lopez Jonathan investigator.; Maamoon Tammaa investigator.; Cohen Jennifer Madan investigator.; Maganti Rama investigator.; Nwankwo Chinasa investigator.; Park Kristen investigator.; Proteasa Simona investigator.; Sandok Evan investigator.; Seinfield Syndi investigator.; Toub Julia investigator.; Wirrell Elaine investigator.; Arbildi Marcela investigator.; Thien Truong Tran investigator.;
• Is Part Of: Epilepsia open. Volume 2:Issue 1(2017)
• Page Start: 20
• Page End: 31
• Publication Date: 2017-01-03
• Subjects: Clinical trials -- Diagnostic accuracy -- Accreditation -- Multicenter collaboration; Epilepsy -- Periodicals; Epilepsy -- Research -- Periodicals; Epilepsy; Periodicals; Fulltext; Internet Resources; Periodicals; 616.853005
• DOI: 10.1002/epi4.12033
• Languages: English
• ISSNs: 2470-9239

Abstract

Summary: Objective: 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. Methods: 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. Results: 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. Significance: 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 trials.