NIMH Data 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, or general repositories such as Figshare.
- NIMH Data Archive
- Common Data Elements
- BRAIN Initiative Informatics Infrastructure
- Resource Sharing Plans
NIMH Data Archive
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, researchers who are funded by NIMH are required 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 holding human subjects data from NIMH and NIAAA awardees, the NDA holds data from the Adolescent Brain and Cognitive Development Study, the Human Connectome projects, and the Osteoarthritis Initiative. Specific details about data sharing expectations can be found at:
- Notice of Data Sharing Policy for the National Institute of Mental Health (NOT-MH-19-033)
- Notice of Data Sharing Policy for Autism Data (NOT-MH-20-010)
- Notice of NIAAA Data-Sharing Policy for Human Subjects Grants Research Funded by the National Institute on Alcohol Abuse and Alcoholism (NOT-AA-19-020)
Details concerning data preparation, submission, and access to NDA can be found at the NIMH Data Archive. Both the Webinars & Tutorials pages as well as the help desk are available to help researchers get started using the NDA.
Common Data Elements
An important discovery that has been made from the data deposited in the NDA is the 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 potentially introduces errors.
An obvious way to solve this problem is to strongly encourage 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 Data Harmonization Approach page.
NIMH is also interested in supporting research into new ways to collect clinical or phenotypic data, but researchers are encouraged to collect data using both the recommended instruments as well as the new instruments. NIMH recognizes that there is a need to periodically revisit recommended data dictionaries and is working with other mental health funding agencies to establish a process to do that.
- Notice Announcing the National Institute of Mental Health (NIMH) Expectations for Collection of Common Data Elements (NOT-MH-20-067)
- Notice Announcing the Availability of Common Data Elements for Research Related to the Public Health Emergency caused by Coronavirus Disease 2019 (COVID-19) (NOT-MH-20-061)
- Notice Announcing the Availability of Common Data Elements for Research Related to Early Psychosis (NOT-MH-17-009)
- Notice Announcing the Availability of Common Data Elements for Research Related to Eating Disorders (NOT-MH-15-031)
- Notice Announcing Data Harmonization for NIMH Human Subjects Research via the PhenX Toolkit (NOT-MH-15-009)
BRAIN Initiative Informatics Infrastructure
The NIH Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative has created an informatics infrastructure for all of the different data collection modalities that are being created as part of the BRAIN Initiative. A schematic of the funded awards is below (Figure 1). 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 (NOT-MH-19-010). Full details about any of the Informatics awards can be found here.
Fig. 1 The components of the BRAIN Initiative Informatics infrastructure. Blue circles indicate data archives, pink rounded rectangles indicate standards efforts, yellow rectangles indicate software awards. Details about all awards can be found here. Last Updated: June 2020
Resource Sharing Plans
NIMH has outlined the expectations for Resource Sharing Plans in NOT-MH-19-033. All applications involving human subjects that are submitted to or referred to NIMH are expected to include a Resource Sharing Plan as part of the application. The portion of that plan dealing with data must include: 1) a summary of the data that will be shared 2) a description of the standard(s) and/or data dictionaries that will be used to describe the data set, and 3) the proposed schedule to validate that the data are compliant with the data dictionary that is being used. Compliance with this data sharing plan will become a special term and condition in the Notice of Award. See below for some sample Resource Sharing Plans: