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

Vojtech Huser1, Dikla Shmueli-Blumberg2

  • 11 National Library of Medicine, National Institutes of Health, Bethesda, MD, USA.

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|April 21, 2018
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Summary
This summary is machine-generated.

Sharing de-identified clinical trial data is growing. This study compares data sharing platforms and details the National Institute on Drug Abuse Data Share platform, highlighting trends for secondary data use.

Keywords:
Common data elementsdata sharingindividual participant data

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Area of Science:

  • Clinical Trials Data Sharing
  • Health Informatics
  • Data Management

Background:

  • Increasing adoption of de-identified individual participant data sharing in human clinical trials.
  • Focus on semantic integration and common data elements for research data standardization.
  • Need for comparative analysis of existing data sharing platforms.

Purpose of the Study:

  • Compare clinical trial data sharing platforms based on size, policies, and features.
  • Provide a detailed case study of the National Institute on Drug Abuse (NIDA) Data Share platform.
  • Identify current and future trends facilitating secondary research use of clinical trial data.

Main Methods:

  • Comparative analysis of multiple data sharing platforms.
  • Case study methodology focusing on the NIDA Data Share platform.
  • Examination of platform usage, data formats, de-identification, and common data elements.

Main Results:

  • Overview of various data sharing platforms' characteristics.
  • Detailed insights into NIDA Data Share: past usage, data formats, de-identification strategies, and use of common data elements.
  • Identification of key trends in data sharing for secondary research.

Conclusions:

  • Data sharing platforms vary significantly in their offerings and policies.
  • NIDA Data Share serves as a valuable resource for de-identified clinical research data.
  • Future trends indicate a continued expansion and improvement of secondary data use from clinical trials.