NDLI: Validation of data quality in the Swedish National Register for Breast Cancer

Content Provider	Springer Nature : BioMed Central
Author	Löfgren, Lars Eloranta, Sandra Krawiec, Kamilla Asterkvist, Annette Lönnqvist, Charlotta Sandelin, Kerstin
Abstract	Background The National Breast Cancer Register (NBCR) of Sweden was launched in 2008 and is used for quality assurance, benchmarking, and research. Its three reporting forms encompass Notification, Adjuvant therapy and Follow-up. Target levels are set by national and international guidelines. This national validation assessed data quality of the register. Methods Data recorded through the Notification form were evaluated for completeness, timeliness, comparability and validity. Completeness was assessed by cross-linkage to the Swedish Cancer Register (SCR). Comparability was analyzed by comparing registration routines in NBCR with national and international guidelines. Timeliness was defined as the difference between the earliest date of diagnosis and the reporting date to NBCR. Validity was assessed by re-abstraction of medical chart data for 800 randomly selected patients diagnosed in 2013. Results The completeness of the NBCR was high with a coverage across regions and years (2010–2014) of 99.9%. Of all incident cases reported to the NBCR in 2013 (N = 8654), 98.5% were included within 12 months and differences between health regions were essentially negligible. Coding procedures followed guidelines and were uniformly adhered to. The proportion of missing values was < 5% for most variables and reported information generally had high exact agreement (> 90%). Conclusions Completeness of data, comparability and agreement in the NBCR was high. For clinical quality purposes and benchmarking, improved timeliness is warranted. Assessment of validity has resulted in a thorough review of all variables included in the Notification form with clarifications and revision of selected variables.
Related Links	https://bmcpublichealth.biomedcentral.com/counter/pdf/10.1186/s12889-019-6846-6.pdf
Ending Page	11
Page Count	11
Starting Page	1
File Format	HTM / HTML
ISSN	14712458
DOI	10.1186/s12889-019-6846-6
Journal	BMC Public Health
Issue Number	1
Volume Number	19
Language	English
Publisher	BioMed Central
Publisher Date	2019-05-02
Access Restriction	Open
Subject Keyword	Public Health Medicine Epidemiology Biostatistics Vaccine Environmental Health Breast cancer Quality register Validation Medicine/Public Health
Content Type	Text
Resource Type	Article
Subject	Public Health, Environmental and Occupational Health
Journal Impact Factor	3.5/2023
5-Year Journal Impact Factor	3.9/2023

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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