Tag Archives: nih

Effective July 1, 2025 – New NIH Public Access Policy

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It was announced on April 30, 2025, that the 2024 NIH Public Access Policy, originally planned to come into effect at the end of 2025 will now be effective as of July 1, 2025.

A key difference between the 2008 and the new 2024 NIH Public Access Policy has to do with how quickly a full-text PMC version of the research article is required to be made publicly available.

In the 2008 version of the policy, the PMC copy had up to 12 months after official publication to become publicly available. The 2024 version of the policy removes the 12-month publisher embargo option and requires the article’s PMC version to become available immediately upon official publication. The new policy will apply to all NIH-funded research articles submitted for journal publication starting on July 1st.

From: https://www.nih.gov/about-nih/who-we-are/nih-director/statements/accelerating-access-research-results-new-implementation-date-2024-nih-public-access-policy

“While the 2008 Policy allowed for an up to 12-month delay before such articles were required to be made publicly available, in 2024, NIH revised the Public Access Policy to remove the embargo period so that researchers, students, and members of the public have rapid access to these findings.”

From: NOT-OD-25-101- Revision: Notice of Updated Effective Date for the 2024 NIH Public Access Policy:

“NIH’s default position is maximum transparency regarding research and research findings. This Notice updates the Effective Date of the 2024 NIH Public Access Policy, NOT-OD-25-047, to July 1, 2025 at which time it will replace the 2008 Public Access Policy. All other aspects of the Policy remain the same.“

From: NOT-OD-25-047 – 2024 NIH Public Access Policy:

“Regarding submission to PubMed Central, compliance with the Policy may be achieved through either:

  • Submission of the electronic version of the Author Accepted Manuscript to PubMed Central upon its acceptance for publication, for public availability without embargo upon the Official Date of Publication, or
  • Submission of the Final Published Article to PubMed Central from journals or publishers with formal agreements with NLM, upon the Official Date of Publication, for public availability without embargo.“

Learn more about how to comply with the NIH Pubic Access Policy or Ask Us your questions.

NIH Common Data Element (CDE) Repository

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The practice of re-using a research survey or measurement instrument (while respecting copyright and giving proper attribution) – especially a validated one – is a common one that everyone  (especially research funders) can agree makes research more efficient and cost-effective.  For example, anyone familiar with the REDCap electronic data capture tool is likely aware of the REDCap Shared Library that “is a repository for REDCap data collection instruments and forms that can be downloaded and used by researchers at REDCap partner institutions“. Even NIH survey materials like the NIH’s All of US Programs are available for download from there.



Even though a data collection instrument in its entirety often cannot satisfy the unique needs of an original research project, it is still useful to collect the commonly-used individual data elements/variables of an instrument in a consistent and standardized way (that other researchers are also adopting in their own projects) because this makes the data collected for diverse studies more interoperable (i.e. increases the potential for this information to be shared/combined in future research projects).

And “the use of particular standards to enable interoperability of datasets” is an important component of the 2023 NIH Data Management and Sharing Policy, which aligns with the FAIR data principles – see: 

“NIH has issued the Data Management and Sharing (DMS) policy (effective January 25, 2023) to promote the sharing of scientific data. Sharing scientific data accelerates biomedical research discovery, in part, by enabling validation of research results, providing accessibility to high-value datasets, and promoting data reuse for future research studies.“

This brings us to the NIH Common Data Element (CDE) Repository, which is “hosted and maintained by the National Library of Medicine (NLM)”. To encourage the use of Common Data Elements (CDEs) and make it easier for researchers to identify CDEs that might be useful for their research project, NLM has created this searchable repository/catalog that users can freely access online.

Users can search for individual CDEs or multiple CDEs that are curated into Forms. The search can also be limited to NIH-Endorsed CDEs, which are CDEs that have “been reviewed and approved by an expert panel, and meet established criteria”. Furthermore, “NIH-recognized bodies (institutes, research initiatives, etc.) may submit CDEs to the NIH CDE Governance Committee for consideration for endorsement” via the Repository’s homepage – see: 

NIH Common Data Element (CDE) Repository – https://cde.nlm.nih.gov/home

From the NIH CDE Repository User Guide: https://cde.nlm.nih.gov/guides

“The NIH CDE Repository uses the Unified Medical Language System (UMLS) Terminology Service (UTS) Sign on Service which lets you set up an account and sign in using your NIH credentials, your account with a research organization, or a personal account such as Google, Microsoft, or Login.gov.

A user account is not required to browse the NIH CDE Repository, but when you are signed in, you will have expanded access to features. User account holders can create Boards and save CDEs and Forms to them, remember your preferences on all your devices, and if approved, become a curator, and view/manage your organization’s content. Users with NIH credentials can choose to see CDEs of any registration status – including previewing draft CDEs that have not yet been published.”

NLM also offers these CDE training options where you can learn more:

Questions? Ask Us at the MSK Library!

NIH All of Us Researcher Workbench – Data Browser

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The NIH All of Us Research Program is “part of an effort to advance individualized health care by enrolling one million or more participants to contribute their health data over many years”.

All of Us data is derived from various sources, including surveys, shared electronic health records, and much more. This collected data is housed in the All of Us Research Hub, which uses a tiered-data access model that includes a Public Tier dataset that “displays high-level summaries of the data available for research. Through the Data Browser, one can explore anonymized, aggregated participant data and summary statistics.”

As Memorial Sloan Kettering Cancer Center is listed as registered Institution with a Data Use and Registration Agreement (DURA) in place, MSK researchers can proceed to register for an account if they wish to gain access the curated datasets beyond the Public Tier dataset. 
Note: Authorized users of the All of Us data are expected to conduct research that follows and conforms to the All of Us Research Program data use policies.

The interactive, public Data Browser is a great place to learn about the type and quantity of data that All of Us collects so that interested researchers can start thinking about potential research questions that this data could help answer. Here’s a glimpse at what it looks like – from https://databrowser.researchallofus.org:

The Data Browser can be searched using keywords across all data types, or users can choose to click on the browsable tiles to explore a particular data type or source. 

From: https://databrowser.researchallofus.org/survey/social-determinants-of-health

For example, the Social Determinants of Health tile will lead users to more specific information, including a view of the survey questions themselves, each presented with a link to “See Answers” that leads to a breakdown of the aggregated participant answers.

To learn more about the NIH All of Us Researcher Workbench and to get an idea of how other researchers are already using this data, please check out the following resources:

…or Ask Us at the MSK Library!