Notice of Data Sharing Policy for Autism Data
Notice Number:

Key Dates

Release Date:

January 13, 2020

Related Announcements



Issued by

National Institute of Mental Health (NIMH)

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

National Institute on Deafness and Other Communication Disorders (NIDCD)

National Institute of Environmental Health Sciences (NIEHS)

National Institute of Neurological Disorders and Stroke (NINDS)


Widespread data sharing by research communities adds significant value to research and accelerates the pace of discovery. The NIMH Data Archive (, NDA) has been established to enable the responsible sharing and use of data collected from and about human subjects by the entire research community. Consistent with authorities under the 21st Century Cures Act, researchers who are conducting autism research involving human subjects funded by the Institutes participating in this Notice are required to deposit all raw and analyzed data (including, but not limited to, clinical, genomic, imaging, and phenotypic data) into the NDA infrastructure.

Unless NIH stipulates otherwise during the negotiation of the terms and conditions of a grant award, this Notice applies to all grant applications and awards that involve human subject research related to autism that are submitted after September 1, 2020 through all Funding Opportunity Announcements (FOAs)in which the institutes participatingin this notice are also participants in the FOA. Investigators with applications assigned to NIMH will abide by the data sharing timeline published in NOT-MH-19-033. The Notice does not apply to following types of applications:

  • Fellowship (F)
  • Research Career Development (K)
  • Training (T)
  • Small Business (SBIR/STTR)
  • Small Grants (R03)
  • Education (R25)

This Notice updates and replaces NOT-MH-09-005. Data that were previously stored in the National Database for Autism Research referred to in that Notice have been incorporated in the NIMH Data Archive (NDA). Non-NIH funded researchers with human subjects data relevant to autism are welcome to deposit their data if they are willing to adhere to the archive’s data sharing terms and conditions (

The data archive is a rich source of data that can be used in a variety of ways, including the development of preliminary data to support an application. Investigators are strongly encouraged to explore the data and the data dictionaries that are available before submitting an application.

Resource Sharing Expectations for Grant Applications

NDA provides the infrastructure and support to enable autism researchers to deposit their data and to share that data with the research community.

Prior to applying for a grant, investigators should review the planning section of the web site ( Applicants are strongly encouraged to use clinical and phenotypic data collection instruments/data dictionaries that have already been defined rather than create new versions of those data dictionaries. There are several required data collection instruments, mostly related to demographic and sample information, that must be used by all researchers for data harmonization purposes ( Applicants should also plan to collect the data needed to generate global unique identifiers (GUIDs) for each study subject ( Informed consent documents should describe how study data will be shared with NDA and the research community (

The necessary funds for submitting data to the NDA should be included in the requested budget. A cost estimator ( is available to facilitate the calculation of these costs.

Post-Award Data Management

Data from funded awards will be submitted to NDA every 6 months. Within 6 months of the original award, awardees will provide a Data Submission Agreement signed by the principal investigator and an institutional business official. In most cases, a single NDA Collection containing the data associated with each grant award will be established. Submitting data to this Collection is distinct from sharing that data with the research community. Submitted data will generally be held in a private enclave open only to the awardee until the data are shared with the research community. Data submission requires that data undergo validations and other quality control checks as the data are deposited. Performing these checks improves the reliability and reproducibility of the data. While the general data sharing expectation is for data to be submitted every 6 months, researchers are strongly encouraged to use the NDA validation tool ( much more frequently. Awardees are strongly encouraged to submit the full study or clinical trial protocol if one exists, as additional information for each Collection.

Data will be shared with the research community when papers using the data have been accepted for publication or at the end of the award period (including the first no cost extension), whichever occurs sooner. Applicants are encouraged to share basic demographic and raw baseline data shortly after data submission to encourage collaborations in the research community.

In addition to submitting the data associated with a grant award as they are collected, researchers are expected to separately submit to NDA the specific data that was used for each resulting publication by creating an NDA Study. NDA assigns a digital object identifier to each study, so studies should be created prior to publication and will only be shared when papers are accepted for publication. Creation of these studies encourage rigor and reproducibility (


Please direct all inquiries to:

For technical assistance with data submission, please contact the NDA help desk (

For other inquiries please contact:

Gregory K. Farber, Ph.D.
National Institute of Mental Health (NIMH)
Telephone: 301-435-0778

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