Stockholm CREAtinine Measurements project

First published 01/02/2024

Last updated 17/10/2024

Data source

Human

Other

Pharmacy dispensing records

Primary care medical records

Registration with healthcare system

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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).

https://onlinelibrary.wiley.com/doi/10.1111/joim.13418

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: Automatic extraction of healthcare databases from the region of Stockholm, and linkage with several national and regional government registers and quality registers.

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: being a citizen of Stockholm for more than 30 days

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

Event triggering creation of a record in the data source: Accessing any form of healthcare

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: Linkage is done by the Swedish Government via the unique personal identification number of each citizen. Thereafter the dataset is pseudoanomymized and send to the researchers for analysis

Linkage description, possible linkage: Depending on data source

Linked data source 1

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

Data source, other: Birth Registry

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 2

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

Data source, other: Cancer Registry

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 3

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

Data source, other: COVID-19 seropositivity records

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 4

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

Data source, other: Intensive care Units register

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 5

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

Data source, other: LISA Registry

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 6

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

Data source, other: Renal Registry

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 7

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

Data source, other: SWEDEHEART and SWEDEHEF

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 8

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

Data source, other: Swedish Dementia Registry (SVEDEM)

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 9

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

Data source, other: The Dispensed Drug Registry

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 10

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

Data source, other: The Population Registry (Cause of death)

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 11

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

Data source, other: Vård Analys Databasen (VAL; the Region Stockholm healthcare data warehouse administrative health data registry of Stockholm region)

Linkage strategy: Probabilistic

Linkage variable: An encrypted key created by the Government that tranforms the individual personal identiciation number in a random identifier

Linkage completeness: 100.00%

Linked data source 12

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: We update our dataset recurrently every 3 years. There is the possibility to perform additional linkages with Swedish registers or others pending approval by the ethics board and within the conditions imposed by the data owners.

Linkage variable: Depending on data source

Linkage completeness: Depending on data source

Data management specifications that apply for the data source

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)?: 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: 31/12/2022

Common Data Model (CDM) mapping

CDM mapping Has the data source been converted (ETL-ed) to a common data model?: No