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

Bergin PS 1 , Beghi E 2 , Sadleir LG 3 , Brockington A 1 , Tripathi M 4 , Richardson MP 5 Show all authors , Bianchi E 2 , Srivastava K 6 , Jayabal J 1 , Legros B 7 , Ossemann M 8 , McGrath N 9 , Verrotti A 10 , Tan HJ 11 , Beretta S 12 , Frith R 1 , Iniesta I 13 , Whitham E 14 , Wanigasinghe J 15 , Ezeala-Adikaibe B 16 , Striano P 17 , Rosemergy I 18 , Walker EB 1 , Alkhidze M 19 , Rodriguez-Leyva I 20 , Ramírez González JA 20 , D'Souza WJ 21 , EpiNet Study Group

Affiliations 

  • 1 Department of Neurology Auckland City Hospital Auckland New Zealand
  • 2 IRCCS-Istituto di Ricerche Farmacologiche Mario Negri Milan Italy
  • 3 Department of Paediatrics University of Otago Wellington New Zealand
  • 4 Department of Neurology All India Institute of Medical Sciences New Delhi India
  • 5 Division of Neuroscience King's College London London United Kingdom
  • 6 Bharati Vidyapeeth Deemed University Medical College Pune India
  • 7 Department of Neurology Université Libre de Bruxelles Brussels Belgium
  • 8 CHU Mont-Godinne Yvoir Belgium
  • 9 Department of Medicine Whangarei Hospital Whangarei New Zealand
  • 10 Department of Pediatrics University of L'Aquila L'Aquila Italy
  • 11 UKM Medical Centre Kuala Lumpur Malaysia
  • 12 Department of Neurology San Gerardo Hospital ASST Monza Italy
  • 13 Department of Neurology Palmerston North Hospital Palmerston North New Zealand
  • 14 Flinders Medical Centre and Flinders University Bedford Park South Australia Australia
  • 15 University of Colombo Colombo Sri Lanka
  • 16 University of Nigeria Teaching Hospital Enugu Nigeria
  • 17 Istituto Giannina Gaslini and University of Genoa Genoa Italy
  • 18 Department of Neurology Wellington Hospital Wellington New Zealand
  • 19 Institute of Neurology and Neuropsychology Tbilisi Georgia
  • 20 Central Hospital "Dr. Ignacio Morones Prieto" San Luis Potosi Mexico
  • 21 Department of Medicine St. Vincent's Hospital The University of Melbourne Melbourne Victoria Australia
Epilepsia Open, 2017 Mar;2(1):20-31.
PMID: 29750210 DOI: 10.1002/epi4.12033

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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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