title: The impact of privacy protections on recruitment in a multicenter stroke genetics study.
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.
authors.affiliation: Department of Health Evaluation Sciences, University of Virginia, Charlottesville, USA.
authors.forename: D T
authors.initials: DT
authors.lastname: Chen
authors.forename: B B
authors.initials: BB
authors.lastname: Worrall
authors.forename: R D
authors.initials: RD
authors.lastname: Brown
authors.forename: T G
authors.initials: TG
authors.lastname: Brott
authors.forename: B M
authors.initials: BM
authors.lastname: Kissela
authors.forename: T S
authors.initials: TS
authors.lastname: Olson
authors.forename: S S
authors.initials: SS
authors.lastname: Rich
authors.forename: J F
authors.initials: JF
authors.lastname: Meschia
mesh_terms: D002545:Brain Ischemia / Q000453:epidemiology / Q000235:genetics*; D003219:Confidentiality / Q000592:standards*; D005191:Family Characteristics; D020022:Genetic Predisposition to Disease; D006801:Humans; D007258:Informed Consent; D009042:Motivation; D015337:Multicenter Studies as Topic / Q000592:standards*; D018579:Patient Selection; D010375:Pedigree; D035781:Siblings / Q000523:psychology*; D013997:Time Factors
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