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NIA Data Management and Sharing Guidance

On January 25, 2023, NIH’s new Final NIH Policy for Data Management and Sharing came into effect, replacing the 2003 NIH Data Sharing Policy. The policy requires NIH-funded researchers to submit a plan prior to award that outlines how scientific data from their research will be managed and shared. Upon approval, the plan becomes part of the terms and conditions of the grant award. To support implementation of the policy, NIH institutes and centers may provide institute-specific guidance, such as identifying preferred data sharing resources that are supported by the institute.

NIH has separate policies on Genomic Data Sharing and Model Organism Sharing that fall under the umbrella of the larger NIH Data Management and Sharing Policy. NIA developed the Alzheimer’s Disease Genomics Sharing Plan that provides specific genomic data sharing guidance to NIA grantees conducting Alzheimer's disease and related dementias research. For research related to these areas, investigators are advised to follow the appropriate policy. For all other NIA-funded research, follow the NIA-specific data sharing guidance outlined on this page.

Preparing a DMS Plan? Use these resources to help:

NIA-Specific Sample Plans

NIA has created sample DMS plans to assist applicants with developing plans.

Sample Plans and Research Categories
Sample Plan Research Category
Clinical data from human research participants Behavioral and Social Research
Survey, interview, and biological data (tiered access) Behavioral and Social Research
Non-human data (primates) Behavioral and Social Research
Secondary data analysis Behavioral and Social Research
Survey and interview data Behavioral and Social Research
*Human clinical and genomic data Neuroscience
Non-human data (rodents) Neuroscience
*Clinical data (human biospecimens) Neuroscience
*Drug discovery including intellectual property Neuroscience

Note: The asterisk (*) refers to samples that use Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) data.


NIA-Specific Guidance on Data Management and Sharing

Browse the questions below to explore NIA-specific guidance on the 2023 Data Management and Sharing Policy.

Which applications require a data management and sharing plan?

Under the new NIH Policy, almost all competing NIH awards will require a sharing plan that must be approved by the program officer prior to award. Intramural research is also required to have a Data Management and Sharing Plan.

Applications that must include a DMS Plan:

  • Research project grants, including many activity codes that begin with DP, P, and R, as well as R00 transition applications
  • Individual Career Development (K) Awards, including K00 transition applications
  • Small Business Awards (SBIR/STTR)

Applications that do not require a DMS Plan:

  • Training Grants (T, D43)
  • Fellowships (F)
  • Research Education Grants (R25)
  • Dissertation Awards (R36)
  • Conference Grants (R13)
  • Institutional Career Development Awards (K12, KL2)

See the full list of activity codes (PDF, 252K) covered in the new DMS policy.

What do I need to include in my application?

NIA encourages data management and data sharing practices consistent with the FAIR (findable, accessible, interoperable, and re-usable) data principles. NIA requires all six elements identified in the NIH policy to be addressed in the data management and sharing plan, these include:

  • Data type
  • Related tools, software, and/or code
  • Standards
  • Data preservation, access, and associated timelines
  • Access, distribution, and reuse considerations
  • Oversight of data management and sharing

Investigators should include funds for sharing as part of the competing application budget. Costs for data curation, de-identification, reconsenting, and other efforts related to data sharing can be substantial. Learn more about Allowable Costs for Data Management and Sharing and ensure that all possible costs are considered in proposed budgets. To identify suitable repositories, investigators should consult the listing of biomedical data sharing resources curated by the National Library of Medicine and contact their NIA program officer for assistance.

Data management and sharing plans for NIA research may need to address different issues based on the type of study or data collected.

  • Studies collecting human data must address issues related to consent and privacy.
    • Consent forms: Institutional Review Board approved consent forms need to contain language that will allow the broadest possible sharing of de-identified data to investigators unaffiliated with the parent study. The language should avoid undue restrictions on sharing and be consistent with the data sharing plan prepared for NIA.
    • Protecting privacy: The NIH Policy element on Access, Distribution, or Reuse Considerations discusses the need to de-identify data when making them available for broad sharing. Some of the challenges to de-identifying data include software that can reconstruct faces from brain images or the possibility of re-identifying individuals by combining research data with administrative data. NIA expects data management and sharing plans to certify that no attempt will be made to re-identify participants from de-identified data.
  • Longitudinal studies: Longitudinal studies present additional challenges in de-identification as a consistent record of participant identity must be maintained through multiple waves of data collection. In addition, participants may have been recruited using prior versions of consent forms that did not allow broad sharing. Data management and sharing plans should acknowledge instances where this might arise and indicate how potential issues may be mitigated (e.g., coding procedures, reconsenting participants).
  • Oversight of the DMS Plan: The approved DMS plan will become part of the terms and conditions of the grant award. NIA staff will consider progress in sharing as part of the review of progress during an award. Lack of progress in sharing is a reason to consider delaying, restricting, or reconsidering approval of the next year of support. For renewal applications, prior progress in sharing will be a factor in considering whether to accept the application.
Where in the application should I include the DMS plan?
  1. Add your DMS plan as an attachment under “Other Plan(s)” within the Research Plan section. This will generally not be visible to reviewers but will be rated as acceptable or unacceptable by NIH staff.
  2. Include any budget needed to cover the cost of data storage and sharing as a line item under “Other Direct Costs” (R&R Budget Form Section F).
  3. Within the Budget Justification section, briefly describe your plan for data management and sharing and justify the requested budget. This will be visible to reviewers, who will evaluate whether the requested budget is well-justified.


    Additional Resources

    There are a variety of resources investigators may leverage to develop their data management and sharing plan, including their institutional data librarians. You may also explore:

    • DMPtool: Find templates for NIH data sharing policy and genomic data sharing policy.
    • Data Sharing Resources for Researchers: Explore NIA-funded repositories and knowledge portals where you can submit and access data.
    • Inside NIA Blog: Read recent blog posts from NIA staff on data sharing.
    • PAR-23-236 and PAR-23-237: Notices of Funding Opportunity to support the development of early stage/new and established data repositories and knowledgebases.

    If you have any questions, please contact your program officer.

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