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European Rare Blood Disorders Platform (ENROL)

Providers and Users of data in the Data stream

In order to achieve ENROL objectives, the commitment and involvement from different key actors is envisaged as shown below in the data stream:

Providers of data are defined as any legal entity (health care provider, national / regional registry, scientific networks) providing data to ENROL. Data can be provided as individual pseudonymised data becoming full member of ENROL or in an aggregated way becoming a collaborating member of ENROL.  Identified registries will be invited to participate in ENROL and become data providers.

Users of data are defined as any stakeholder with interest on RHDs. Anonymised data from ENROL will be publicly searchable through an interface with pre-defined options for create queries. Third parties interested in accessing pseudonymised data held by ENROL will be required to submit an application form to detail the scientific purposes of the project for which the data is needed. Requests will be evaluated by the Steering and Data Access Committee (SDAC) to ensure the good use of ENROL's assets and its Policy. In case of request approval by SDAC, a legal contract will be signed with users of data for terms and conditions and approved projects and leading researchers will be publicly available to keep a track record.

The main bodies involved in the Governance of the platform are described in the sections of the Coordination team and Steering and Data Access Committee (SDAC).

Euro Blood Net