Member institutions can choose to retain their data locally, aggregating it with other sites during analysis, or submit their data to the data coordinating center (DCC).
The PEDSnet DCC manages technical standards, data flows, and deliverables; conducts quality analysis and remediation; and, manages query execution.
The core PEDSnet data resource meets the HIPAA definition of a limited data set (includes dates).
Sites that choose:
A centralized approach, submit all limited patient-level data elements to the PEDSnet DCC which is responsible for data management, data access, and responding to all PEDSnet approved data requests (queries).
A distributed approach, keep patient-level data elements and provide only those data elements or summary statistics as specified by PEDSnet approved data requests (queries). The PEDSnet DCC is responsible for managing the distributed query system, providing guidance and adjudication for local implementation of PEDSnet standard transformations and quality analyses, ensuring that a distributed query was sent to the appropriate PEDSnet partners, and that responses were received in a timely manner.
Queries that cannot be executed using the limited patient-level data stored at the DCC are distributed to all sites for execution.
The resulting architecture renders the DCC as the single point of contact for any scientific user, while adapting to PEDSnet members’ regulatory and institutional mandates.