NIMH Data Management and Sharing for Applicants and Awardees
Through a series of Guide Notices, the National Institute of Mental Health (NIMH) has indicated our interest in making data produced during NIMH awards widely available to the research community as soon as possible after data collection. The Guide Notices have focused on the resources needed to responsibly share data from human research participants. Those data generally have sensitive information.
NIMH also strongly encourages awardees to deposit their data from other organisms in appropriate repositories such as:
- Gene Expression Omnibus
- Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative Data Archives
- Model Organism Databases
- Other NIH-supported generalist repositories
Helpful information about sharing scientific data can be found on the NIH Scientific Data Sharing website.
On this page:
- Where should NIMH data be shared?
- What are common data elements and data dictionaries?
- What happens with data collected from the BRAIN Initiative?
- Sample data management and sharing plans
Where should NIMH data be shared?
NIMH has established an informatics infrastructure, the NIMH Data Archive (NDA) , 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, NIMH requires researchers who are funded by NIMH to deposit all raw and analyzed data (including, but not limited to, clinical, genomic, imaging, and phenotypic data) from experiments involving human subjects into the NDA.
NDA also hosts human subjects data collected by researchers funded by the National Institute of Alcoholism and Alcohol Abuse (NIAAA) and by autism researchers across NIH Institutes and Centers. In addition to storing human subjects data from NIMH and NIAAA awardees, the NDA holds data from the Osteoarthritis Initiative , the Accelerating Medicines Partnership® (AMP®) program—Schizophrenia (SCZ), and other significant data sets. Specific details about data sharing expectations can be found at:
- NOT-MH-23-100: Data Sharing Policy for the National Institute of Mental Health
- NOT-MH-20-010: Data Sharing Policy for Autism Data
- NOT-AA-23-002: NIAAA Data-Sharing Information for Human Subjects Grants Research Funded by the National Institute on Alcohol Abuse and Alcoholism
What are common data elements and data dictionaries?
We’ve learned from the data deposited in the NDA that there are an enormous number of different data collection instruments (also known as data dictionaries) used in mental health research. While it is possible in some cases to map the individual questions (data elements) in these data dictionaries to allow data to be aggregated or queried, that process is time consuming and could introduce errors.
To address this problem, NIMH strongly encourages the mental health research community to use the same data dictionaries rather than to continue to invent new ones. The NDA provides an online Data Dictionary with a searchable interface to find data structures that awardees are expected to use for new data collection. The NDA Data Dictionary is updated as researchers extend existing data collection instruments or create new instruments. For more information, see the NDA NIMH Common Data Elements page.
NIMH supports research into new ways to collect clinical or phenotypic data. Researchers are encouraged to collect data using the recommended and new instruments. NIMH recognizes the need to revisit recommended data dictionaries periodically and is working revisit recommended data dictionaries and is working with other mental health funding agencies to establish a process to do that.
- NOT-MH-23-105: Expectations for the Collection of Common Data Elements for NIV-Funded Research at the National Institute of Mental Health .
- NOT-MH-20-067: NIMH Expectations for Collection of Common Data Elements
- NOT-MH-20-061: Availability of Common Data Elements for Research Related to the Public Health Emergency caused by Coronavirus Disease 2019 (COVID-19)
- NOT-MH-17-009: Availability of Common Data Elements for Research Related to Early Psychosis
- NOT-MH-15-031: Availability of Common Data Elements for Research Related to Eating Disorders
- NOT-MH-15-009: Data Harmonization for NIMH Human Subjects Research via the PhenX Toolkit
What happens with data collected from the BRAIN Initiative?
The NIH Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative has created an informatics infrastructure for newly-created data collection modalities. The infrastructure has been created by supporting data archives, data standards, and software to analyze data in the archives. NIH has published data sharing expectations for BRAIN Initiative funded investigators . Full details about any of the Informatics awards can be found in the BRAIN Initiative Funded Awards .
Sample Data Management and Sharing Plans
NIMH has outlined the expectations for data management and sharing plans in the Notice of Data Sharing Policy for the National Institute of Mental Health .
NIH has also issued a final NIH Policy for Data Management and Sharing:
- Final NIH Policy for Data Management and Sharing
- Supplemental Information to the NIH Policy for Data Management and Sharing: Elements of an NIH Data Management and Sharing Plan
The following sample data management and sharing plans are examples consistent with the expectations in the NIMH and NIH Notices. These are meant as good examples of data management and sharing plans that contain all of the required information. Your plan will be different, but hopefully, the examples will allow you to create a useful plan.
If you have questions about these data management and sharing plans or would like additional example plans, please contact Gregory Farber (email@example.com).
Compliance with the approved data management and sharing plan will become a special term and condition in the Notice of Award and will be monitored by the NIMH throughout the duration of the award.