4 124

Cited 7 times in

An international pilot study of an Internet-based platform to facilitate clinical research in epilepsy: the EpiNet project.

Authors
 Peter Bergin  ;  Lynette Sadleir  ;  Benjamin Legros  ;  Zarine Mogal  ;  Manjari Tripathi  ;  Nitika Dang  ;  Simone Beretta  ;  Clara Zanchi  ;  Jorge Burneo  ;  Thomas Borkowski  ;  Yang Je Cho  ;  Michel Ossemann  ;  Pasquale Striano  ;  Kavita Srivastava  ;  Hui Jan Tan  ;  Jithangi Wanigasinghe  ;  Wendyl D’Souza 
Citation
 Epilepsia, Vol.53(10) : 1829-1835, 2012 
Journal Title
 Epilepsia 
ISSN
 0013-9580 
Issue Date
2012
Abstract
PURPOSE: We created an epilepsy patient database that can be accessed via the Internet by neurologists from anywhere in the world. The database was designed to enroll and follow large cohorts of patients with specific epilepsy syndromes, and to facilitate recruitment of patients for investigator-initiated clinical trials. METHODS: The EpiNet database records physician-derived information regarding seizure type and frequency, epilepsy syndrome, etiology, drug history, and investigations. It can be accessed from any country by approved investigators via a secure, password-protected Website. All data are encrypted. The database is for both research and clinical purposes. Investigators were invited to register any patient with epilepsy, but were particularly encouraged to register patients when uncertain of the optimal management. Participation required approval from investigators' ethics committees and institutional review boards, and all patients or their caregiver provided written informed consent. Patients were not enrolled in clinical trials in this pilot study. KEY FINDINGS: The international pilot study recruited patients from September 2010 to November 2011. Sixty-four investigators or research assistants from 25 centers in 13 countries registered 1,050 patients. Patients with a wide range of epilepsy syndromes and etiologies were registered. Patients' ages ranged from 2 weeks to 90 years. SIGNIFICANCE: The Website was successfully used by doctors working in different health systems. The pilot study confirmed that this low-cost, collaborative approach to research has great potential. Large, multicenter cohort studies will commence in 2012, and randomized clinical trials are being planned. All epileptologists are invited to join this project.
Full Text
http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2012.03636.x/abstract
DOI
10.1111/j.1528-1167.2012.03636.x
Appears in Collections:
1. College of Medicine (의과대학) > Dept. of Neurology (신경과학교실) > 1. Journal Papers
Yonsei Authors
Cho, Yang Je(조양제)
Export
RIS (EndNote)
XLS (Excel)
XML
URI
https://ir.ymlib.yonsei.ac.kr/handle/22282913/90173
사서에게 알리기
  feedback

qrcode

Items in DSpace are protected by copyright, with all rights reserved, unless otherwise indicated.

Browse