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NEUROLOGY 2005;64:721-724
© 2005 American Academy of Neurology
Brief Communications

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

D. T. Chen, MD, MPH*, B. B. Worrall, MD, MSc*, R. D. Brown, Jr, MD, MPH, T. G. Brott, MD, B. M. Kissela, MD, T. S. Olson, CTA, S. S. Rich, PhD and J. F. Meschia, MD for the SWISS Investigators{dagger}

From the Departments of Health Evaluation Sciences (Drs. Chen and Worrall), Psychiatric Medicine (Dr. Chen), and Neurology (Dr. Worrall), University of Virginia, University of Virginia Center for Biomedical Ethics (Dr. Chen), Charlottesville; Department of Neurology (Dr. Brown) and Mayo Alliance for Clinical Trials (T. S. Olson), Mayo Clinic, Rochester, MN; Department of Neurology (Drs. Brott and Meschia), Mayo Clinic, Jacksonville, FL; Department of Neurology (Dr. Kissela), University of Cincinnati, Cincinnati, OH; and Department of Public Health Sciences (Dr. Rich), Wake Forest University School of Medicine, Winston-Salem, NC.

Address correspondence and reprint requests to Dr. James F. Meschia, Department of Neurology, Mayo Clinic, 4500 San Pablo Road, Jacksonville, FL 32224; e-mail meschia.james{at}mayo.edu

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.




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