2.4 Finding Data
- All of Us: data enclave with restricted access health data from EHR, surveys, measurements, and wearable devices
- NCATS N3C: data enclave for COVID-19 EHR data collected from multiple institutions.
- ICPSR: large archive of social, behavioral, and political research, both public and restricted data available.
- Public repositories and databases
If you are looking for secondary data to re-use for a project, CDABS can facilitate access to high quality data. There are a few special databases that you have access to because UMB has an institutional agreement or membership in place.
One great database comes from the results of the All of US program, which is an NIH sponsored program which is aiming to build a very large database of health information from 1 million or more participants. All of Us focuses on recruiting participants from traditionally underrepresented populations, meant to rectify lack of representation in smaller cohort studies. It encourages research that investigates social and behavioral determinants of health. Data is obtained and harmonized from electronic health records, surveys, measurements, samples, and fitness devices. All of us has some aggregated publicly available data, but also participant level, de-identified data that requires a a registration process to gain access to the data. The data stays in a platform called the researcher Workbench, which provides tools for working with the data. J-P and I can help walk you through the registration process, learn to use the tools, and help you build your queries.
A similar product which we are in the process of getting access to is the NCATS National COVID Cohort Collaborative. This is also data drawn from ehr data, it comes from multiple institutions and as the name suggests focuses on patients with COVID and other related diseases.
ICPSR is one of the world’s largest archives of social, behavioral, and political data, and it is the repository for some large public surveys like NHANES. Since UMB has an institutional membership you do have free access to the data – though for restricted datasets you will need to apply for access.
And while those are sites you have special access to as a UMB member – there are any number of public repositories out there that we can help you navigate and find what you are looking for.