The impact of privacy protections on recruitment in a multicenter stroke genetics study.
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.
Chen
D T
DT
Department of Health Evaluation Sciences, University of Virginia, Charlottesville, USA.
Worrall
B B
BB
Brown
R D
RD
Brott
T G
TG
Kissela
B M
BM
Olson
T S
TS
Rich
S S
SS
Meschia
J F
JF
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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