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. 2023 Jul 10;21:70. doi: 10.1186/s12961-023-01026-1

Table 1.

Profiles depending on the kind of data hub organization

Data hubs managed centrally Data hubs having decentralized management
Actors No peculiarities

May not a single data controller

No data management strategy

Data aspects

Control the data stored

Data from ‘general population’

Use ‘text’, ‘numbers’

Receive and store data from: single source, multiple sources

Data from ‘patient groups’, ‘general population’, ‘experimental settings’

Use ‘text’, ‘images’, ‘numbers’

Data stored in ‘XML’

Business processes

Data quality control

SOPs

Procedure to know who provides data​​

No peculiarities
ELSI aspects

Pseudonymized data

Require legal approval

No peculiarities