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://optimumpatientcare.org.au/opcrda/

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

OPCRDA collects de-identified Electronic Medical Records (EMR) patient data from GP practices and respiratory and allergy specialist practices across Australia. EMR data is supplemented with patient reported information/outcome data in a subgroup of patients.
Event triggering registration

Event triggering registration of a person in the data source

Practice registration

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

Death

Event triggering creation of a record in the data source

Patient visit to the clinician, patient reported information and outcomes
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

Monthly

Informed consent for use of data for research

Other

Informed consent, other

OPCRDA has Royal Australian College of General Practitioners (RACGP) Human Research Ethics Committee (HREC) approval to collect de-identified patient data from participating GP practices or centres, and to provide anonymised patient data for research purposes. OPCRDA has Bellberry HREC approval to collect and store anonymised patient data from participating respiratory and allergy specialist practices for research purposes.

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