NEW NIH Data Management & Sharing Policy

The days of sharing data as it is requested by colleagues are over. For data to be open it requires submission to a data repository that will maintain the data and make it openly available to anyone requiring it—with exceptions. NIH does not endorse or require the sharing of data in specific repositories but check to see if:

• your NIH program, the type of data generated, center, institute, Office (ICO) policy and/or Funding Opportunity Announcement (FOA) has specific requirements,
• the journal you will be publishing the results of your study for their requirements,
• the University IRB requirements for PHI data. (also review Informed Consent for Research with Data and Biospecimens: Points to Consider and Sample Language for Future Use and/or Sharing

Also, NIH is presently seeking comments on a draft policy, Protecting Privacy When Sharing Human Research Participant Data.

Over the years NIH programs have developed a number of subject-based repositories. Recently NIH has worked to ensure these repositories are easier to access and submit data. Browse the list to see if one fits your data: NIH-supported Scientific Data Repositories

If you find one, then check out the Access to Data tab and review the requirements. The file type, file size, and total file size of your data may impact whether the repository is correct for you. Does your terminology/metadata match that of the repository? What accompanying information is required?

If no NIH repository is suitable for your data, then you will have to find a data repository NIH released Supplemental Information to the NIH Policy for Data Management and Sharing: Selecting a Repository for Data Resulting from NIH-Supported Research to assist you in selecting a data repository. A database of repositories to assist is re3data and do not forget The Hive: University of Utah Research Data Repository.

A few points to remember:

Primary consideration should be given to data repositories that are discipline or data-type specific to support effective data discovery and reuse. If no appropriate discipline or data-type-specific repository is available, researchers should consider a variety of other potentially suitable data-sharing options:

• Small datasets (up to 2GB in size) may be included as supplementary material to accompany articles submitted to PubMed Central.
• Data repositories, including generalist repositories or institutional repositories, that make data available to the larger research community, institutions, or the broader public.
• Large datasets may benefit from cloud-based data repositories for data access, preservation, and sharing.

Large Datasets (petabytes)

The NIH Science and Technology Research Infrastructure for Discovery, Experimentation, and Sustainability (STRIDES) Initiative is a partnership with Google Cloud, Amazon Web Services (AWS) and Microsoft Azure to assist with large datasets.

Benefits

• Professional services—Access to professional service consultations and technical support from the STRIDES Initiative partners.
• Training—Access to training for researchers, data owners, and others to help ensure optimal use of available tools and technologies.
• Potential collaborative engagements—Opportunities to explore methods and approaches that may advance NIH's biomedical research objectives (with scope and milestones of engagements agreed upon separately).
• Discounts on STRIDES Initiative partner services—Favorable pricing on computing, storage, and related cloud services for NIH Institutes, Centers, and Offices (ICOs) and NIH-funded institutions.

At this time, the STRIDES Initiative supports programs/projects that want to prepare, migrate, upload, and compute data in the cloud. In the future, the ability to access data across NIH and NIH-funded institutions from various research domain repositories will become available.