European Rare Blood Disorders Platform

25/07/2025
25/07/2025
Data source
Human
Disease registry
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Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).
Coordination team

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

No

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

Yes

Description of data collection

ENROL gathers patient data from various rare hematological disorder registries across Europe, functioning as an umbrella platform under ERN-EuroBloodNet.
Participating clinical centers collect data using standardized electronic case report forms built within REDCap, a secure, web-based application designed for data capture in research studies.
Data from these centers and registries are then harmonized and integrated into a centralized database.
This system ensures data quality, interoperability, and supports linkage with national registries and other relevant data sources.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis
Other

Event triggering registration of a person in the data source, other

Registration in the ENROL data source is triggered upon the patient providing informed consent for inclusion. This occurs after the patient with a rare hematological disorder is identified within the network, and eligibility criteria are confirmed.

Event triggering de-registration of a person in the data source

Death
Loss to follow up
Other

Event triggering de-registration of a person in the data source, other

Patient withdraws their informed consent

Event triggering creation of a record in the data source

A new record is created when a patient with a rare hematological disorder is registered in a contributing registry and their data are integrated into ENROL.
This typically occurs following the initial clinical assessment by a specialist within the ERN-EuroBloodNet network, once eligibility criteria are confirmed and informed consent is obtained.
Data source linkage

Linkage

Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?

Yes

Linkage description, pre-linked

ENROL integrates data from national and regional registries on rare hematological disorders that are part of the ERN-EuroBloodNet network.
This pre-linked data provides a broad view of patients across multiple sources, avoiding data fragmentation and promoting interoperability.

Linkage description, possible linkage

ENROL can be linked on an ad-hoc basis with other data sources using the Common Data Elements (CDE) framework and SPIDER pseudonymization system developed by the Joint Research Centre (JRC).
Data management specifications that apply for the data source

Informed consent for use of data for research

Required for all studies

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

Yes

Data source preservation

Are records preserved in the data source indefinitely?

Yes

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

Yes
Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

Yes

CDM Mappings

Data source ETL CDM version

OMOP Common Data Model (CDM) version 5.4

Data source ETL status

In progress