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

Clin Trials. 2018 Aug;15(4):413-423. doi: 10.1177/1740774518769655. Epub 2018 Apr 20.


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.

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

Publication types

  • Research Support, N.I.H., Intramural

MeSH terms

  • Clinical Trials as Topic
  • Data Anonymization*
  • Humans
  • Information Dissemination*