Hepatitis Delta International Network (HDIN) - Patient Registry

01/02/2024
17/10/2024
Data source
Human
Hospital inpatient records
Hospital outpatient visit records
Primary care medical records
Download as PDF
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).

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

Patient data is gathered from the respective hospital/practice documentation (patient files) and entered into the registry
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis
Other
Practice registration

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

Informed consent by patient.

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

Death
Loss to follow up
Practice deregistration

Event triggering creation of a record in the data source

Investigator driven decision at routine patient 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?

No
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Other

Informed consent, other

There is a steering committee to evaluate requests for data access

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