The impact of privacy protections on recruitment in a multicenter stroke genetics study

Neurology. 2005 Feb 22;64(4):721-4. doi: 10.1212/01.WNL.0000152042.07414.CC.

Abstract

The authors reviewed the recruitment of stroke-affected sibling pairs using a letter-based, proband-initiated contact strategy. The authors randomly sampled 99 proband enrollment forms (Phase 1) and randomly sampled 50 sibling reply cards (Phase 2). The sibling response rate was 30.6%, for a pedigree response rate of 58%. Of the siblings who replied, 96% authorized further contact. Median time from proband enrollment to pedigree DNA banking, which required 3+ probands, was 134 days.

Publication types

  • Clinical Trial
  • Multicenter Study
  • Randomized Controlled Trial
  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Brain Ischemia / epidemiology
  • Brain Ischemia / genetics*
  • Confidentiality / standards*
  • Family Characteristics
  • Genetic Predisposition to Disease
  • Humans
  • Informed Consent
  • Motivation
  • Multicenter Studies as Topic / standards*
  • Patient Selection*
  • Pedigree
  • Siblings / psychology*
  • Time Factors