ArticleBMC medical research methodology2022
Opportunities and obstacles in linking large health care registries: the primary secondary cancer care registry - breast cancer.
Article in BMC medical research methodology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed.
- Understanding return to work after breast cancer through real-world data linkage framework: a Luxembourg digital oncology use case.ESMO real world data and digital oncology · 2026Article
- Implications of Data Extraction and Processing of Electronic Health Records for Epidemiological Research: Observational Study.Journal of medical Internet research · 2025Observational
- Optimizing data linkage for maximizing the potential of Luxembourg's national cancer registry: a comprehensive scoping review.Frontiers in oncology · 2025Review
- Conceptual framework for establishing twins prevention and continuous health promotion programme: a qualitative study.BMJ open · 2024Article
- Adverse health effects after breast cancer up to 14 years after diagnosis.Breast (Edinburgh, Scotland) · 2022Review
- Integration of Cancer Screening Data into Routine Cancer Surveillance Systems: A Florida Pilot Project.Journal of registry management · 2022Article
- Cancer registries and data protection in the age of health digital interoperability in Europe: The perspective of the Italian Network of Cancer Registries (AIRTUM).Frontiers in oncology · 2022Article
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe growing volume of health data provides new opportunities for medical research. By using existing registries, large populations can be studied over a long period of time. Patient-level linkage of registries leads to even more detailed and extended information per patient, but brings challenges regarding responsibilities, privacy and security, and quality of data linkage. In this paper we describe how we dealt with these challenges when creating the Primary Secondary Cancer Care Registry (PSCCR)- Breast Cancer.
methodsThe PSCCR - Breast Cancer was created by linking two existing registries containing data on 1) diagnosis, tumour and treatment characteristics of all Dutch breast cancer patients (NCR), and 2) consultations and diagnoses from primary care electronic health records of about 10% of Dutch GP practices (Nivel-PCD). The existing registry governance structures and privacy regulations were incorporated in those of the new registry. Privacy and security risks were reassessed. Data were restricted to females and linked using postal code and date of birth. The breast cancer diagnosis was verified in both registries and for a subsample of 44 patients with the GP as well.
resultsA collaboration agreement was signed in which the organisations retained data responsibility and accountability for 'their' registry. A Trusted Third Party performed the record linkage. Ten percent of the patients with breast cancer could be linked to the primary care registry, as was expected based on the coverage of Nivel-PCD, and finally 7 % could be included. The breast cancer diagnosis was verified by the GP in 42 of the 44 patients.
conclusionsWe developed and validated a procedure for patient-level linkage of health data registries without a unique identifier, while preserving the integrity and privacy of the original registries. The method described may help researchers wishing to link existing health data registries.
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