Overview

Storing, managing, standardizing, and publishing the vast amounts of data produced by biomedical research is a critical component to the mission of NIAMS and NIH. The research on arthritis, autoimmune, musculoskeletal, and skin diseases generates datasets of significant sizes and variety which provide a great scope for data science and its applications.

This webpage will facilitate the identification of data science and data sharing resources for the NIAMS investigator community. Its contents will be revised periodically with timely announcements and links to relevant online resources.

NIH Policy for Data Management and Sharing

The NIH Policy for Data Management and Sharing (DMS Policy) was issued to promote the management and sharing of scientific data generated from NIH-funded or conducted research. The NIH DMS Policy applies to applications and proposals submitted to NIH on or after January 25, 2023.

Detailed information is available on the NIH Scientific Data Sharing website.

Other NIH resources relevant to the DMS Policy can be found on the following sites:

• 2023 DMS Policy FAQ
• Getting Ready for NIH’s DMS Policy 
• NOT-OD-21-013: Final NIH Policy for Data Management and Sharing 

Data Management and Sharing Plan Development

Under the DMS policy, NIH sponsored investigators will:

• Prospectively plan for the managing and sharing of scientific data
• Submit a DMS plan with their grant applications
• Comply with the approved plan

Useful resources:

• Detailed Guidance and Sample Plans
• Supplemental DRAFT Guidance: Elements of a NIH Data Management and Sharing Plan.

For illustrative purposes only:

• A template used by the NIH Intramural Research Program (an example based on The DMP Tool, a service of the University of California).
• Tips for Writing a Data Management and Sharing Plan (an example from NICHD).

Data Sharing and Access

Data repository considerations:

• For maximum sharing of scientific data, the investigators should use an established data repository that is most appropriate for the discipline and the type of data generated from their research project.
• While NIH does not endorse or require sharing data in any particular repository, some initiatives and funding opportunities may have their own requirements.
• Although NIH encourages sharing scientific data, healthcare data often includes electronic health records and other identifiable information about patients that requires additional protections.

Useful resources:

• NIH Guidance for Selecting a Data Repository
• NIH-supported Repositories for Sharing Scientific Data
• NIH Generalist Repository List
• Informed Consent for Secondary Research and Biospecimens: Points to Consider and Sample Language for Future Use and/or Sharing developed by the NIH Office of Science Policy
• Consent Templates and Guidance that Address Storage, Sharing, and Future Research Using Your Specimens and Data developed by the NIH Office of Intramural Research, Office of Human Subjects Research Protections
• Best Practices for Sharing Research Software Frequently Asked Questions developed by the NIH Office of Data Science Strategy

The Arthritis and Autoimmune and Related Diseases Knowledge (ARK) Portal

The ARK Portal is a virtual resource that accumulates, organizes, and links core datasets generated by research teams focused on arthritis, autoimmune, skin, and related diseases. Directed by NIAMS and developed and maintained by Sage Bionetworks, the ARK Portal will house a broad and diverse portfolio of datasets including those from the Accelerated Medicines Partnership® Rheumatoid Arthritis and Systemic Lupus Erythematosus (AMP® RA/SLE). Access to the datasets on the portal is free to the public. Some datasets will require users to register and agree to a data-use agreement.

External References

• FAIR Guiding Principles
• dkNET
• Webinar: Implementation of New NIH Data Management and Sharing Policy