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

D. T. Chen, B. B. Worrall, R. D. Brown, T. G. Brott, B. M. Kissela, T. S. Olson, S. S. Rich, James F. Meschia

Research output: Contribution to journalReview article

10 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)721-724
Number of pages4
Issue number4
StatePublished - Feb 22 2005


ASJC Scopus subject areas

  • Clinical Neurology

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