title: An international pilot study of an Internet-based platform to facilitate clinical research in epilepsy: the EpiNet project.
abstract: OBJECTIVE
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Neurology, Auckland City Hospital, and Centre for Brain Research, University of Auckland, Auckland, New Zealand. pbergin@adhb.govt.nz
authors.forename: Peter
authors.initials: P
authors.lastname: Bergin
authors.forename: Lynette
authors.initials: L
authors.lastname: Sadleir
authors.forename: Benjamin
authors.initials: B
authors.lastname: Legros
authors.forename: Zarine
authors.initials: Z
authors.lastname: Mogal
authors.forename: Manjari
authors.initials: M
authors.lastname: Tripathi
authors.forename: Nitika
authors.initials: N
authors.lastname: Dang
authors.forename: Simone
authors.initials: S
authors.lastname: Beretta
authors.forename: Clara
authors.initials: C
authors.lastname: Zanchi
authors.forename: Jorge
authors.initials: J
authors.lastname: Burneo
authors.forename: Thomas
authors.initials: T
authors.lastname: Borkowski
authors.forename: Yang Je
authors.initials: YJ
authors.lastname: Cho
authors.forename: Michel
authors.initials: M
authors.lastname: Ossemann
authors.forename: Pasquale
authors.initials: P
authors.lastname: Striano
authors.forename: Kavita
authors.initials: K
authors.lastname: Srivastava
authors.forename: Hui Jan
authors.initials: HJ
authors.lastname: Tan
authors.forename: Jithangi
authors.initials: J
authors.lastname: Wanigasinghe
authors.forename: Wendyl
authors.initials: W
authors.lastname: D'Souza
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000927:Anticonvulsants / Q000627:therapeutic use*; D035843:Biomedical Research / Q000379:methods*; D002648:Child; D002675:Child, Preschool; D002986:Clinical Trials as Topic; D003625:Data Collection / Q000379:methods; D016208:Databases, Factual / Q000706:statistics & numerical data; D004827:Epilepsy / Q000145:classification / Q000188:drug therapy* / Q000209:etiology; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007391:International Cooperation; D020407:Internet; D008875:Middle Aged; D015337:Multicenter Studies as Topic; D018579:Patient Selection; D010865:Pilot Projects; D055815:Young Adult
chemical_list: D000927:Anticonvulsants