Literature DB >> 16279292

Limited access data sets from studies funded by the National Heart, Lung, and Blood Institute.

Nancy L Geller1, Paul Sorlie, Sean Coady, Jerome Fleg, Lawrence Friedman.   

Abstract

The NHLBI has recently developed standards for protection of subject confidentiality which enable distribution of large data sets collected in completed epidemiological studies and clinical trials. This allows other investigators to pursue research using the data these studies have generated. An ethical commitment to protect the privacy of the research subjects requires careful review and some compromise in data details prior to distribution. To meet the challenge posed by the ethical and legal requirements to protect participants' privacy and making data sets useful for researchers, the NHLBI has devised a policy which seeks to balance these two opposing forces. This paper describes this policy as well as the limited access data sets currently available from NHLBI.

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Year:  2004        PMID: 16279292     DOI: 10.1191/1740774504cn050oa

Source DB:  PubMed          Journal:  Clin Trials        ISSN: 1740-7745            Impact factor:   2.486


  5 in total

1.  Quality of life predicts one-year survival in patients with implantable cardioverter defibrillators.

Authors:  Chi-Wen Kao; Erika Friedmann; Sue A Thomas
Journal:  Qual Life Res       Date:  2010-02-03       Impact factor: 4.147

2.  Black-White Differences in Incident Fatal, Nonfatal, and Total Coronary Heart Disease.

Authors:  Lisandro D Colantonio; Christopher M Gamboa; Joshua S Richman; Emily B Levitan; Elsayed Z Soliman; George Howard; Monika M Safford
Journal:  Circulation       Date:  2017-07-11       Impact factor: 29.690

Review 3.  Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.

Authors:  Susan Bull; Nia Roberts; Michael Parker
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

4.  Providing Contemporary Access to Historical Biospecimen Collections: Development of the NHLBI Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC).

Authors:  Carol A Giffen; Leslie E Carroll; John T Adams; Sean P Brennan; Sean A Coady; Elizabeth L Wagner
Journal:  Biopreserv Biobank       Date:  2015-07-17       Impact factor: 2.300

5.  Towards agreement on best practice for publishing raw clinical trial data.

Authors:  Iain Hrynaszkiewicz; Douglas G Altman
Journal:  Trials       Date:  2009-03-18       Impact factor: 2.279

  5 in total

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