Literature DB >> 29676586

Data sharing platforms for de-identified data from human clinical trials.

Vojtech Huser1, Dikla Shmueli-Blumberg2.   

Abstract

Data sharing of de-identified individual participant data is being adopted by an increasing number of sponsors of human clinical trials. In addition to standardizing data syntax for shared trial data, semantic integration of various data elements is the focus of several initiatives that define research common data elements. This perspective article, in the first part, compares several data sharing platforms for de-identified clinical research data in terms of their size, policies and supported features. In the second part, we use a case study approach to describe in greater detail one data sharing platform (Data Share from National Institute of Drug Abuse). We present data on the past use of the platform, data formats offered, data de-identification approaches and its use of research common data elements. We conclude with a summary of current and expected future trends that facilitate secondary research use of data from completed human clinical trials.

Entities:  

Keywords:  Common data elements; data sharing; individual participant data

Mesh:

Year:  2018        PMID: 29676586     DOI: 10.1177/1740774518769655

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


  6 in total

1.  Analyzing Real-World Use of Research Common Data Elements.

Authors:  Vojtech Huser; Liz Amos
Journal:  AMIA Annu Symp Proc       Date:  2018-12-05

2.  Core outcomes set for research on the treatment of opioid use disorder (COS-OUD): the National Institute on Drug Abuse Clinical Trials Network protocol for an e-Delphi consensus study.

Authors:  Niranjan S Karnik; Cynthia I Campbell; Megan E Curtis; David A Fiellin; Udi Ghitza; Kathryn Hefner; Yih-Ing Hser; R Kathryn McHugh; Sean M Murphy; Sterling M McPherson; Landhing Moran; Larissa J Mooney; Li-Tzy Wu; Dikla Shmueli-Blumberg; Matisyahu Shulman; Robert P Schwartz; Kari A Stephens; Katherine E Watkins; John Marsden
Journal:  Trials       Date:  2021-01-28       Impact factor: 2.728

Review 3.  Sharing individual participant data: through a systematic reviewer lens.

Authors:  Larysa H M Rydzewska; Lesley A Stewart; Jayne F Tierney
Journal:  Trials       Date:  2022-02-21       Impact factor: 2.728

4.  Current recommendations/practices for anonymising data from clinical trials in order to make it available for sharing: A scoping review.

Authors:  Aryelly Rodriguez; Christopher Tuck; Marshall F Dozier; Stephanie C Lewis; Sandra Eldridge; Tracy Jackson; Alastair Murray; Christopher J Weir
Journal:  Clin Trials       Date:  2022-06-22       Impact factor: 2.599

Review 5.  Obtaining and managing data sets for individual participant data meta-analysis: scoping review and practical guide.

Authors:  Matthew Ventresca; Holger J Schünemann; Fergus Macbeth; Mike Clarke; Lehana Thabane; Gareth Griffiths; Simon Noble; David Garcia; Maura Marcucci; Alfonso Iorio; Qi Zhou; Mark Crowther; Elie A Akl; Gary H Lyman; Viktoria Gloy; Marcello DiNisio; Matthias Briel
Journal:  BMC Med Res Methodol       Date:  2020-05-12       Impact factor: 4.615

6.  Discoverability of information on clinical trial data-sharing platforms.

Authors:  Paije Wilson; Vojtech Huser
Journal:  J Med Libr Assoc       Date:  2021-04-01
  6 in total

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