Table 1.

Registries and clinical data networks based on EHR-derived data

Type of Data Resource	Benefits	Challenges
Disease-based (eg, COVID-19) registry	Centralized harmonization and curation of data Easier to manage Specific data items for the disease are harmonized and curated centrally Feasibility of informed consent for use of data	Privacy and institutional risks associated with transferring data to a central repository Less transparency on data use Comparisons with other diseases not possible Threat of a single-point-of-failure Labor intensive if each site needs to standardize and curate the data
Clinical data network	Typically involves a distributed network of clinics, HPOs and/or research centers Data not restricted to patients with the disease, or to data items directly related to the disease Comparisons with “controls” and with patients with other diseases is possible No single point of failure unless there is dependency on a central hub	High number of individuals and records requires additional security and privacy safeguards Detailed, curated data on the disease of interest is not always available Harmonization of complex data elements is hard to coordinate Analytics may require special methods Informed consent may not be feasible

Abbreviation: HPO, health provider organization.