Research Funder Requirements

The Centers for Disease Control and Prevention, and the Agency for Toxic Substances and Disease Registry, agencies of the U.S. Department of Health and Human Services (HHS), use grants and cooperative agreements to fund research and non-research public health programs. They require awardees for projects that involve the collection or generation of data with federal funds to develop, submit and comply with a Data Management Plan (DMP) for each collection or generation of public health data undertaken as part of the award and, to the extent appropriate, provide access to and archiving and/or long term preservation of collected or generated data. 

Whereas many funders require a DMP for a funded project, CDC requires one for every data collection or data generation of public health data funded by an award.  The DMP may be submitted with the proposal that is in response to a FOA or after the funding has been awarded. Awardees should submit a DMP during the project planning phase, but no later than prior to the initiation of generating or collecting public health data.   A DMP should include the following information:

• A description of the data to be collected or generated in the proposed project;
• Standards to be used for the collected or generated data;
• Mechanisms for or limitations to providing access to and sharing of the data (include a description of provisions for the protection of privacy, confidentiality, security, intellectual property, or other rights). This section should address access to identifiable and de-identified data (see below for additional information about access);
• Statement of the use of data standards that ensure all released data have appropriate documentation that describes the method of collection, what the data represent, and potential limitations for use; and
• Plans for archiving and long-term preservation of the data, or explaining why long-term preservation and access are not justified. This section should address archiving and preservation of identifiable and de-identified data (see below for additional information regarding archiving).

Remember that the DMP is a living document that can, and should, be updated throughout the life cycle of the data. The DMP may be evaluated during the application, study proposal, project review process, or at any time in the project period.

Researchers must provide access to their public health data.  Some FOAs require that the data be submitted directly to the CDC Wonder database. Awardees whose terms of award do not include submitting data to CDC are expected to plan and prepare for access to and archiving and/or long-term preservation of collected and/or generated data within the funding period. The final version of a collected and/or generated data set intended for release or sharing should be made available within thirty months after the end of data collection and/or generation, except surveillance data which should be made accessible within a year of the end of the collection cycle.  Additionally, they should ensure the quality of the data they make available, and provide it in a non-proprietary format.  

For public use de-identified datasets, an accompanying data dictionary and other documentation relevant to the use of the data set should be deposited in a sustainable repository to provide access to the data.  Data that cannot be de-identified can be provided by request under a data-use agreement.  Awardees are required to inform the appropriate CDC point-of-contact for their award about the location by updating their DMP.  

For data underlying scientific publication, the data should be made available coincident with the publication of the paper, unless the data set is already available via a release or sharing mechanism.  At a minimum, release of the data set should consist of a machine-readable version of the data tables shown in the paper.  

Do you have any questions or need assistance understanding the CDC requirements? We can help you with selecting an appropriate repository, understanding funder requirements, and drafting and reviewing your data management plans.  Contact us at dmconsult@virginia.edu.    

CDC Resources 

Recommended Data Documentation Elements  [Appendix D page 19] 

CDC/ATSDR Policy on Releasing and Sharing Data

CDC Plan For Increasing Access To Scientific Publications And Digital Scientific Data Generated With CDC Funding 

Public Access to CDC Funded Publications