Using the Internet to recruit patients for epilepsy trials: results of a New Zealand pilot study

Epilepsia. 2010 May;51(5):868-73. doi: 10.1111/j.1528-1167.2009.02393.x. Epub 2009 Nov 3.

Abstract

Purpose: We created a database that could be accessed via the Internet by any neurologist or pediatric neurologist in New Zealand. The database was designed to facilitate recruitment of patients for investigator-driven drug trials.

Methods: We established an epilepsy database, and invited neurologists and pediatric neurologists throughout New Zealand to register patients via the Internet when they were uncertain of the optimal management. Details regarding seizure type and frequency, epilepsy syndrome, etiology, drug history, and investigations were collected. We produced an algorithm to select patients who had failed to respond to a single antiepileptic drug (AED). These patients were randomized immediately via the Internet to receive a different drug. Participants were not reimbursed.

Results: The pilot study recruited patients from mid-June to December 2007. Sixteen neurologists participated; neurologists were based in eight different cities. One hundred thirty-seven patients were registered, of whom 113 were considered suitable for drug trials. Thirty-five patients who had used a single antiepileptic drug AED were enrolled, and 14 of these were successfully randomized online to a different drug. Follow-up information was entered via the Internet for all 108 patients who were seen again during the following year.

Discussion: We have demonstrated that patients can be recruited for trials and randomized from routine clinics via the Internet. Trials could compare AEDs or look at other aspects of epilepsy management. An international pilot study is planned. Neurologists are invited to enroll patients with epilepsy, who would be suitable for randomized controlled trials, into a Web-based register.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Anticonvulsants / therapeutic use*
  • Child
  • Child, Preschool
  • Data Collection / methods
  • Databases, Factual / statistics & numerical data
  • Epilepsy / classification
  • Epilepsy / drug therapy*
  • Feasibility Studies
  • Female
  • Follow-Up Studies
  • Humans
  • Infant
  • Infant, Newborn
  • Internet / statistics & numerical data*
  • Male
  • Middle Aged
  • Multicenter Studies as Topic / methods
  • Neurology / methods
  • New Zealand
  • Patient Selection*
  • Pediatrics / methods
  • Pilot Projects
  • Randomized Controlled Trials as Topic / methods*
  • Randomized Controlled Trials as Topic / standards
  • Registries / statistics & numerical data
  • Research Design / standards

Substances

  • Anticonvulsants