National Diabetes Research Platform Scotland

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://institute-genetics-cancer.ed.ac.uk/about

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: In Scotland, a standardised electronic health record (Scottish Care Information-Diabetes; SCI-diabetes) has been in use for patient care in diabetes since the late 1990s, gaining nationwide coverage by mid-2000s.
The record uses a unique healthcare identifier, the Community Health Index (CHI) number, which is also used on all other administrative health datasets in Scotland.
By linking these datasets together, we sought to generate a nationwide cohort of people with diabetes, updated annually with those newly diagnosed, and rich in a wide range of data.

For more information, please refer to the Cohort profile publication: https://doi.org/10.1136/bmjopen-2022-063046

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: Death

Emigration

Event triggering creation of a record in the data source: Database consists of diabetes records linked to several other administrative NHS data sources;
Events include Primary care encounter, Outpatient attendance, hospital discharge/transfer, maternity episode, cancer registration, death, drug prescription/dispensing, external register (e.g. renal) registration, national healthcare dental procedure

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: Deaths, hospitalisations, primary care encounters, screening visits, renal register entry, prescribing, and others.

Linked data source 1

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Scottish Morbidity Records (SMR) 00 - Outpatient Attendance

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 2

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Scottish Morbidity Records (SMR) 01 - Acute Inpatient and Day Case

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 3

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Scottish Morbidity Records (SMR) 02 - Maternity Inpatient and Day Case

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 4

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Scottish Morbidity Records (SMR) 04 - Mental Health Inpatient and Day Case

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 5

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Scottish Morbidity Records (SMR) 06 - Scottish Cancer Registry

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 6

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Scottish Morbidity Records (SMR) 11 - Neonatal Inpatient

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 7

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Scottish Renal Registry

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 8

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: NHS Accident and Emergency (A+E) attendance

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 9

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: National Records of Scotland (NRS) Deaths, Infant Deaths, Stillbirths

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 10

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: MIDAS Dental Records

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 11

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Scottish Bowel Screening Programme

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 12

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Electronic Prescribing & Dispensing

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 13

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Diabetes Eye Screening (DES) Retinopathy Screening Images

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Linked data source 14

Pre linked Is the data source described created by the linkage of other data sources?: Yes

Data source, other: Scottish Care Information – Diabetes Collaboration (SCI-Diabetes)

Linkage strategy: Combination

Linkage variable: Patient ID (CHI number)

Linkage completeness: 100%

Data management specifications that apply for the data source

Data source refresh: Yearly

Informed consent for use of data for research: Not Required

Possibility of data validation Can validity of the data in the data source be verified (e.g., access to original medical charts)?: No

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: 01/01/2024

Common Data Model (CDM) mapping

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

CDM Mappings

CDM name: OMOP

CDM website: https://www.ohdsi.org/Data-standardization/

Data source ETL CDM version: 5.3

Data source ETL frequency: 12,00 months

Data source ETL status: Completed

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