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).
https://wfh.org/research-and-data-collection/world-bleeding-disorders-registry/

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?

No

Description of data collection

Online custom-made database where each participating site has their private portal and access to their site's data only.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis

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

Loss to follow up

Event triggering creation of a record in the data source

Treatment, medical consultation, regular follow up visits
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

Deterministic data linkage method for both linkages. All data is de-identified. Each patient is identified through a unique patient identifier, which is developed through a cryptogenic hashing process, if the same cryptogenic hashing process is applied to data from another database, the 2 databases can be linked, while keeping data de-identified.

Linked data source 1

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Czechia National Hemophilia Program (CNHP) Registry - Czechia

Linkage strategy

Deterministic

Linkage variable

Unique patient identifier

Linkage completeness

All mapped data and core dataset are collected annually from each national registry.

Linked data source 2

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Hereditary Bleeding Disorders Registry (HBDR) of the Thai Society of Hematology (TSH) - Thailand

Linkage strategy

Deterministic

Linkage variable

Unique patient identifier

Linkage completeness

All mapped data and core dataset are collected annually from each national registry.
Data management specifications that apply for the data source

Data source refresh

Every 6 months

Informed consent for use of data for research

Required for general use

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

Data source last refresh

Common Data Model (CDM) mapping

CDM mapping

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

No