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New NIH Policies for Controlled Access Data

New NIH Policies for Controlled Access Data

In support of recent security directives, NIH is implementing a technical update to enhance security measures focused on protecting data provided by NIH Controlled-Access Data Repositories (CADRs).

Specifically, as of April 4, 2025, NIH is prohibiting access to and ending any remaining ongoing projects involving NIH CADRs and associated data by researchers and institutions located in countries of concern. These countries include China (including Hong Kong and Macau), Russia, Iran, North Korea, Cuba, and Venezuela, consistent with EO 14117 and 28 CFR Part 202 “Preventing Access to U.S. Sensitive Personal Data and Government-Related Data by Countries of Concern or Covered Persons.” Please see Guide Notice NOT-OD-25-083 for more details.  Any questions about this change can be submitted to gds@mail.nih.gov.

In order to comply with this new NIH policy, TCIA will cease hosting controlled access datasets as of July 8, 2025.  Users with existing Data Usage Agreements on file will have their accounts disabled at 5pm Central on July 7.  TCIA data that was previously controlled access falls into two main categories.  Here is how we plan to handle them moving forward:

  1. Some of our datasets contain images of the head which, in theory, could pose re-identification risks using advanced image processing techniques.  In partnership with the submitters of these datasets, we are implementing defacing and/or masking pipelines to generate new versions of these datasets to remove this re-identification risk.  These will be published under an open-access license. We will also explore the possibility of migrating the unmodified versions of these datasets to https://general.datacommons.cancer.gov/ if there is sufficient community demand.
  2. Some of our datasets are linked with data that historically lived in the NCTN Data Archive, which oversaw requests to access them.  These studies will be migrated to https://clinical.datacommons.cancer.gov/ and their access will continue to be managed by NCI’s Clinical Trial Evaluation Program (CTEP).

We will provide additional details as they become available in subsequent blog posts.