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://web.www.healthdatagateway.org/dataset/67020745-9def-4c6e-b5ac-bb273bd0a20e

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

Data is collected using an Electronic Patient Record system. This data is then extracted from the EPR at quarterly intervals and curated to create the NNRD.
Event triggering registration

Event triggering registration of a person in the data source

Other

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

Admission to neonatal unit in England, Wales, Scotland or Isle of Man.

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

Other

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

Parent request

Event triggering creation of a record in the data source

Admission to neonatal unit in England, Wales, Scotland or Isle of Man triggers admission record. Events that occur on the neonatal unit (daily care summary, drugs given, procedures and diagnoses) are then added to the admission record as and when they occur.
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, possible linkage

All data assuming linkage variables present

Linked data source 1

Pre linked

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

No

Data source, other

Other NHS datasets (Hospital Episode Statistics, PICUNet etc)

Linkage strategy

Deterministic

Linkage variable

NHS Number, Date of birth and maternal postcode at time of birth

Linkage completeness

Completeness of linkages varies on the source that is being linked to
Data management specifications that apply for the data source

Data source refresh

Quarterly

Informed consent for use of data for research

Other

Informed consent, other

There is a 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?

Yes

CDM Mappings

Data source ETL CDM version

5.3.1

Data source ETL frequency

3,00 months

Data source ETL status

Completed