Save Sight Registries

01/02/2024
27/03/2026
Data source
Human
Disease registry
Other
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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).

SaveSightRegistries_Terms of Use_11May2020

English (702.88 KB - PDF) View document

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

Data is collected in real time as doctor sees the patient. Bespoke web browser based data collection system. Patient questionnaires include IVI, KORQ, GAL-9, OSDI, PHQ4. More details in attached documentation.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis
Start of treatment

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

Death
End of treatment

Event triggering creation of a record in the data source

For most modules (diseases within SSR Registry), trigger is patient receiving treatment for disease as first/baseline visit record.
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

Informed consent for use of data for research

Other

Informed consent, other

Some modules for registry is OPT-OUT consent in some countries e.g. Australia, however most have OPT-IN consent where patient consent is sought before being entered in the registry. Further to this, if data is to be used for a publication, a publication committee evaluates these requests for data access/analyses.

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?

No