Literature DB >> 15728301

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

D T Chen1, B B Worrall, R D Brown, T G Brott, B M Kissela, T S Olson, S S Rich, J F Meschia.   

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.

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Mesh：

Year:  2005        PMID： 15728301      PMCID： PMC1713191          DOI： 10.1212/01.WNL.0000152042.07414.CC

Source DB:  PubMed          Journal:  Neurology        ISSN： 0028-3878            Impact factor:   9.910


  8 in total

1.  Protecting the privacy of family members in research.

Authors:  D T Chen; B B Worrall; J F Meschia
Journal:  JAMA       Date:  2001-04-18       Impact factor: 56.272

2.  Protecting the privacy of family members in survey and pedigree research.

Authors:  J Botkin
Journal:  JAMA       Date:  2001-01-10       Impact factor: 56.272

3.  Verifying the stroke-free phenotype by structured telephone interview.

Authors:  J F Meschia; T G Brott; F E Chukwudelunzu; J Hardy; R D Brown; I Meissner; L J Hall; E J Atkinson; P C O'Brien
Journal:  Stroke       Date:  2000-05       Impact factor: 7.914

4.  A search for susceptibility loci for anorexia nervosa: methods and sample description.

Authors:  W H Kaye; L R Lilenfeld; W H Berrettini; M Strober; B Devlin; K L Klump; D Goldman; C M Bulik; K A Halmi; M M Fichter; A Kaplan; D B Woodside; J Treasure; K H Plotnicov; C Pollice; R Rao; C W McConaha
Journal:  Biol Psychiatry       Date:  2000-05-01       Impact factor: 13.382

Review 5.  Ethical and methodological issues in pedigree stroke research.

Authors:  B B Worrall; D T Chen; J F Meschia
Journal:  Stroke       Date:  2001-06       Impact factor: 7.914

6.  Validating the Questionnaire for Verifying Stroke-Free Status (QVSFS) by neurological history and examination.

Authors:  W J Jones; L S Williams; J F Meschia
Journal:  Stroke       Date:  2001-10       Impact factor: 7.914

7.  Reliability of the questionnaire for verifying stroke-free status.

Authors:  James F Meschia; Marc A Lojacono; Mary J Miller; Thomas G Brott; Elizabeth J Atkinson; Peter C O'Brien
Journal:  Cerebrovasc Dis       Date:  2003-12-29       Impact factor: 2.762

8.  The Siblings With Ischemic Stroke Study (SWISS) protocol.

Authors:  James F Meschia; Robert D Brown; Thomas G Brott; Felix E Chukwudelunzu; John Hardy; Stephen S Rich
Journal:  BMC Med Genet       Date:  2002-02-12       Impact factor: 2.103
  8 in total
  5 in total

1.  A survey of the SWISS researchers on the impact of sibling privacy protections on pedigree recruitment.

Authors:  Bradford B Worrall; Donna T Chen; Robert D Brown; Thomas G Brott; James F Meschia
Journal:  Neuroepidemiology       Date:  2005-04-25       Impact factor: 3.282

2.  Personal privacy and public health: potential impacts of privacy legislation on health research in Canada.

Authors:  M Anne Harris; Adrian R Levy; Kay E Teschke
Journal:  Can J Public Health       Date:  2008 Jul-Aug

3.  The Siblings With Ischemic Stroke Study (SWISS): a progress report.

Authors:  James F Meschia; Brett M Kissela; Thomas G Brott; Robert D Brown; Bradford B Worrall; Jeanne Beck; Alexa N Skarp
Journal:  Clin Med Res       Date:  2006-03

4.  Stroke genetic research and adults with impaired decision-making capacity: a survey of IRB and investigator practices.

Authors:  Donna T Chen; James F Meschia; Thomas G Brott; Robert D Brown; Bradford B Worrall
Journal:  Stroke       Date:  2008-07-24       Impact factor: 7.914

5.  Proband race/ethnicity affects pedigree completion rate in a genetic study of ischemic stroke.

Authors:  Brett M Kissela; Thomas G Brott; Robert D Brown; Scott L Silliman; W Mark Brown; Stephen S Rich; James F Meschia
Journal:  J Stroke Cerebrovasc Dis       Date:  2008-09       Impact factor: 2.136
  5 in total

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