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

Peter S. Bergin, Ettore Beghi, Lynette G. Sadleir, Alice Brockington, Manjari Tripathi, Mark P. Richardson, Elisa Bianchi, Kavita Srivastava, Jayaganth Jayabal, Benjamin Legros, Michel Ossemann, Nicole McGrath, Alberto Verrotti, Hui Jan Tan, Simone Beretta, Richard Frith, Ivan Iniesta, Emma Whitham, Jithangi Wanigasinghe, Birinus Ezeala-AdikaibePasquale Striano, Ian Rosemergy, Elizabeth B. Walker, Maia Alkhidze, Ildefonso Rodriguez-Leyva, Jose Alfredo Ramírez González, Wendyl J. D'Souza, on behalf of the EpiNet Study Group, Analía Calle, Claudio Palacios, Anita Cairns, Patrick Carney, Donald Craig, Deepak Gill, Sachin Gupta, Cecilie Lander, Hanka Laue-Gizzi, Natalie Hitchens, Michelle Kiley, Nicholas Lawn, Elizabeth Reyneke, Kate Riney, Meng Tan, Michael Tan, Mark Thieban, Chong Wong, Germain van Rijckevorsel, Ana Gabriela Ferrari Strang, Angela Gifoni, Linden Helio, Bruno Monnerat, Paula Brna, Elizabeth Donner, Stephanie Jacques, Nathalie Jette, Richard McLachlan, Ismail Mohamed, Thi Phuoc Yen Tran, Xiao Bo, Song Fan, Yang Guang, Ming Li, Kang Wang, Shouwen Zhang, Lady Ladino, Jakob Christensen, Margarethe Sophie Kӧlmel, Marina Nikanorova, Annukka Uusitalo, Paivi Vieira, Stephane Auvin, Tamar Ediberidze, Nino Gogatishvili, Tamar Jishkariani, Dieter Dennig, Anja Grimmer, Rosa Michaelis, Susanne Schubert-Bast, Caspar Stephani, Stefan Stodieck, Martin Vollbrandt, Andreas Zellner, Dimitrios Zafeiriou, Andras Fogarasi, Peter Halasz, Rameshwar Nath Chaurasia, Satish Jain, Raj Nair, Pravar Passi, Surekha Rajadhyaksha, Sita Jayalakshmi Sattaluri, Harshuti Shah, Vrajesh Udani, Daniel Costello, Umberto Aguglia, Arnaldo Bartocci, Paolo Benna, Edoardo Ferlazzo, Daniela Laino, Alberto Spalice, Clara Zanchi, Amza Ali, Kheng Seang Lim, Alfredo Ramirez, Neil Anderson, Alan Barber, Pietro Cariga, James Cleland, Nicholas Child, Suzanne Davis, Viswas Dayal, Cameron Dickson, John Doran, Roderick Duncan, Pratima Giri, Michael Herd, David Hutchinson, Bethany Jones, Justin Kao, Dean Kilfoyle, John Mottershead, Colette Muir, Melinda Nolan, Jennifer Pereira, Anna Ranta, Sneha Sadani, Mark Simpson, Claire Spooner, Paul Timmings, Elizabeth Walker, Diana Wei, Ernest Willoughby, Edward Wong, Teddy Wu, Talabi Olusola, Hiba Mahmud, Zarine Mogul, Julio Espinoza, Jose Hernandez Vizarreta, Elia Maria Baeta, Rute Teotónio, Bosanka Jocic-Jakubi, Stevo Lukic, Marko Korošec, Tomaz Zgur, María Gómez Eguílaz, Fredrik Asztely, Pasiri Sithinamsuwan, Joseph Anderson, Pauls Auce, Archana Desurkar, Khalid Hamandi, Andrew Kelso, Violeta Sanchez, Aurangzeb Sidra, Phil Smith, Tim Wehner, Gavin Winston, Edgard Andrade, Meriem Bensalem-Owen, Michelle Boudreau, Tracie Caller, Kevin Chapman, Geetha Chari, Kathryn Davis, Brian Droker, Mirret El-Hagrassy, Dawn Eliashiv, Chigolum Eze, Christi Heck, Arif Kabir, Dmitriy Kolesnik, Alice Lam, Jonathan Lopez, Tammaa Maamoon, Jennifer Madan Cohen, Rama Maganti, Chinasa Nwankwo, Kristen Park, Simona Proteasa, Evan Sandok, Syndi Seinfield, Julia Toub, Elaine Wirrell, Marcela Arbildi, Truong Tran Thien

    Research output: Contribution to journalArticlepeer-review

    4 Citations (Scopus)

    Abstract

    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.

    Original languageEnglish
    Pages (from-to)20-31
    Number of pages12
    JournalEpilepsia Open
    Volume2
    Issue number1
    DOIs
    Publication statusPublished - Mar 2017

    Keywords

    • Accreditation
    • Clinical trials
    • Diagnostic accuracy
    • Multicenter collaboration

    Fingerprint

    Dive into the research topics of 'EpiNet as a way of involving more physicians and patients in epilepsy research: Validation study and accreditation process'. Together they form a unique fingerprint.

    Cite this