SBU makes All of Us Research Hub accessible to researchers with a new
institutional Data Use Agreement
The All of Us Research Hub, part of the National Institutes of Health (NIH) All of Us Research Program, stores health data from a diverse group of participants in the All of Us research program. The Research Hub has tiered levels of access to participant data: public data (no login required); registered data (login required); and controlled data (additional approval required), that incorporate strict data use policies. The program’s tiered data access model allows registered researchers to work with different data types, such as electronic health record data and genomic data, while also protecting participant privacy.
SBU has an agreed institutional DUA (Data Use Agreement) with All of Us, which permits SBU researchers to apply directly for access to a vast pool of health data. A list of all other participating institutions can be found here. A copy of the institutional DUA can be provided by OSP to the investigators approved to get access to the hub.
Researchers can apply for access through the All of Us Research Hub website and register for an account to begin the onboarding process. After the account is created, researchers must log in, complete an SBU developed intake form for data access, complete all required training, and sign a Data User Code of Conduct. As detailed in the Data Use Policies, participant-level data may not be downloaded, copied, or otherwise extracted from the Research Workbench. SBU’s approval is needed to get access.
Who approves access at SBU?
The Office of Research Compliance would be able to approve access to the registered data as well as the controlled data hubs after their review of the intake form and IRB information. For controlled data access, additional review and internal security approvals may be required.
A sample intake form for data access is included below. For any questions, please contact the Office of Research Compliance at orc_ovpr@stonybrook.edu. Dawn Alomar, Assistant Director of Contracts in the Office of Sponsored Programs, can also be contacted for general information and guidance regarding this program and steps required for access.
Sample Intake Form
Requester:
Email:
Department:
Role/Job Title:
Principal Investigator:
Controlled Tier Interest:
Description of Controlled Tier data that will be accessed and how that data will be
used:
Do you have an approved IRB protocol number?
What is your approved IRB Protocol number?
If the use of the data is not for research purposes as approved by an IRB, please
explain
the activity you wish to use the data for:
Please provide the name of the Workspace you will create in the Controlled Tier:
What SBU computers/technology devices will you be using to access the All of Us data
platform for the purposes of this endeavor? Please provide the device name:
Are students participating in this initiative?
I understand I am subject to subsection 301(d) of the Public Health Service: