January 15, 2020: NIH Collaboratory Announces Data and Resource Sharing Page

The NIH Collaboratory Coordinating Center has published a new Data and Resource Sharing Page on the Living Textbook, which is designed to share the data and resources generated by the Demonstration Projects.

“As part of the Collaboratory’s commitment to sharing, all NIH Collaboratory Demonstration Projects are expected to share data and resources, such as protocols, consent documents, public use datasets, computable phenotypes, and analytic code.”  —Data and Resource Sharing Page

The page holds links to datasets and data dictionaries, study tools, ethics and regulatory documentation, computable phenotypes and analytic code, data collection forms, study design papers, main outcomes papers, and other information that might be useful to others.

To assist clinical investigators in planning for sharing these resources, Demonstration Projects are given a Data and Resource Sharing Informational Document and an Onboarding Data and Resource Sharing Questionnaire during the onboarding process.

These documents contain:

  • Questions designed to help investigators think through the unique concerns when sharing data and resources from embedded pragmatic trials
  • Data sharing requirements for the NIH Collaboratory, NIH, and medical journals
  • Examples from NIH Collaboratory Demonstration Projects.
  • Descriptions of data sharing mechanisms, such as archives and enclaves
  • Examples of data sharing platforms
  • Examples of data sharing statements

At closeout, Demonstration Projects are provided a Closeout Data and Resource Sharing Checklist, and investigators from the completed projects use this checklist to provide a final data share package.

For more on data sharing, see the Living Textbook Chapter, Data Sharing and Embedded Research.