Sharing Data

Questions and Answers Table of Contents

Where can I find basic information on data sharing?

See our Data Sharing for Grants: Final Research Data SOP, Data Sharing for Grants: Genome-Wide Association Studies SOP, our Sample Data Sharing Plan, and What Resources Do You Need to Share? in the NIH Grant Cycle: Application to Renewal.

NIH's central Sharing Policies and Related Guidance includes the NIH Data Sharing Policy and Frequently Asked Questions.

What is the data sharing policy?

NIH requires researchers requesting $500,000 or more in direct costs in a year to include a plan to share their final research data in their applications or proposals or explain why data sharing is not possible. NIH's genome-wide association study requirement is part of this policy.

Read more at What Resources Do You Need to Share? in the NIH Grant Cycle: Application to Renewal.

Must all applicants and offerors include a plan for sharing data?

No. You need a data sharing plan only if you're requesting $500,000 or more in direct costs in any year of a grant or contract or if you are proposing research NIH considers to be a genome-wide association study. Read What Resources Do You Need to Share? in the NIH Grant Cycle: Application to Renewal.

What data am I required to share?

You must share final research data and genome-wide association study data. See our Data Sharing for Grants: Genome-Wide Association Studies SOP.

In addition, NIH emphasizes the importance of sharing what it refers to as "unique" data -- data that cannot be readily replicated, e.g., studies of rare diseases or large or unique populations.

What does "final research data" mean?

Final research data means recorded, factual material commonly accepted by the scientific community as necessary to validate research findings. It does not include lab notebooks, preliminary analyses, drafts of scientific papers, or objects such as gels or lab specimens.

When must I start sharing data?

Start sharing your data by the time the main findings from the final data set have been accepted for publication.

What are some other ways to share data?

Other means include publishing, responding to requests individually, or putting data in an archive or online.

Must I share data even if I don't plan to publish it?

Yes, but you still must protect privacy.

Where do I put the plan in my application or proposal?

For grant applications, put your plan -- or justification for its absence -- in Section K in the Resource Sharing Plans section of the PHS 398 Research Plan form, where you describe your Research Plan. Keep in mind that if your research involves genome-wide association studies (GWAS), you need to state that in your cover letter.

Go to What Resources Do You Need to Share? in the NIH Grant Cycle: Application to Renewal for more information.

For contract offerors, follow the instructions in the request for proposals.

Can I place any conditions on the use of my data?

Yes. Put that information in your plan.

Who assesses my data sharing plan?

Your program officer oversees the policy, assesses the adequacy of your plan, and discusses it with you before you submit an application. Then, peer reviewers assess the plan during review.

Though not factored into your priority score, this assessment is recorded in the summary statement for follow-up. While an inadequate plan would not create a bar to award, it flags the program officer to make sure an acceptable plan is in place before we make an award.

For a noncompeting continuation, your program officer will consider your willingness to share as one criterion for continued funding. He or she may also be able to help you develop your plan.

Does my data sharing plan affect my review outcome?

No.

Does the requirement affect my grant's progress report?

Yes. For noncompeting continuation applications, document your sharing of data in your progress report. Go to Send Us an Annual Progress Report in the NIH Grant Cycle: Application to Renewal.

How does my data sharing plan relate to HIPAA?

Data sharing plans must comply with the Health Insurance Portability and Accountability Act.

How can I protect the privacy of my subjects?

Strip identifiers and take other appropriate measures, such as withholding part of the data, statistically altering the data without compromising secondary analyses, requiring researchers who seek data to protect privacy, and providing data access in a controlled site.

Does NIAID publish any clinical trials datasets?

NIAID lists its AIDS-Related Datasets.

Are there special requirements for proposing a genome-wide association study or accessing the data repository?

Yes. See the Data Sharing for Grants: Genome-Wide Association Studies SOP and What Resources Do You Need to Share? in the NIH Grant Cycle: Application to Renewal.

If I have more data sharing questions, where can I get help?

If this policy applies to you, it's a good idea to contact an NIAID program officer before applying. See Contact Staff for Help for contact information. Contractors should ask the contracts staff member listed in the RFP. See the NIAID RFP list or Office of Acquisitions staff listing.

What if my question wasn't answered here, or I'd like to suggest a question?

Email deaweb@niaid.nih.gov with the title of this page or its URL and your question or comment. We answer questions by email and post them here. Thanks for helping us clarify and expand our knowledge base.