Record linkage for pharmacoepidemiological studies in cancer patients

Authors

  • Myrthe P. P. van Herk-Sukel,

    Corresponding author
    • PHARMO Institute for Drug Outcomes Research, Utrecht, the Netherlands
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  • Valery E. P. P. Lemmens,

    1. Eindhoven Cancer Registry, Comprehensive Cancer Center South, Eindhoven, the Netherlands
    2. Department of Public Health, Erasmus University Medical Centre, Rotterdam, the Netherlands
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  • Lonneke V. van de Poll-Franse,

    1. Eindhoven Cancer Registry, Comprehensive Cancer Center South, Eindhoven, the Netherlands
    2. Center of Research on Psychology in Somatic Diseases (CoRPS), Tilburg University, Tilburg, the Netherlands
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  • Ron M. C. Herings,

    1. PHARMO Institute for Drug Outcomes Research, Utrecht, the Netherlands
    2. Department of Health Policy and Management, Erasmus University Medical Centre, Rotterdam, the Netherlands
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  • Jan Willem W. Coebergh

    1. Eindhoven Cancer Registry, Comprehensive Cancer Center South, Eindhoven, the Netherlands
    2. Department of Public Health, Erasmus University Medical Centre, Rotterdam, the Netherlands
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M. P. P. van Herk-Sukel, PHARMO Institute for Drug Outcomes Research, P.O. Box 85222, 3508 AE Utrecht, the Netherlands. E-mail: myrthe.van.herk@pharmo.nl

ABSTRACT

Background

An increasing need has developed for the post-approval surveillance of (new) anti-cancer drugs by means of pharmacoepidemiology and outcomes research in the area of oncology.

Objectives

To create an overview that makes researchers aware of the available database linkages in Northern America and Europe which facilitate pharmacoepidemiology and outcomes research in cancer patients.

Methods

In addition to our own database, i.e. the Eindhoven Cancer Registry (ECR) linked to the PHARMO Record Linkage System, we considered database linkages between a population-based cancer registry and an administrative healthcare database that at least contains information on drug use and offers a longitudinal perspective on healthcare utilization. Eligible database linkages were limited to those that had been used in multiple published articles in English language included in Pubmed. The HMO Cancer Research Network (CRN) in the US was excluded from this review, as an overview of the linked databases participating in the CRN is already provided elsewhere. Researchers who had worked with the data resources included in our review were contacted for additional information and verification of the data presented in the overview.

Results

The following database linkages were included: the Surveillance, Epidemiology, and End–Results–Medicare; cancer registry data linked to Medicaid; Canadian cancer registries linked to population-based drug databases; the Scottish cancer registry linked to the Tayside drug dispensing data; linked databases in the Nordic Countries of Europe: Norway, Sweden, Finland and Denmark; and the ECR-PHARMO linkage in the Netherlands. Descriptives of the included database linkages comprise population size, generalizability of the population, year of first data availability, contents of the cancer registry, contents of the administrative healthcare database, the possibility to select a cancer-free control cohort, and linkage to other healthcare databases.

Conclusions

The linked databases offer a longitudinal perspective, allowing for observations of health care utilization before, during, and after cancer diagnosis. They create new powerful data resources for the monitoring of post-approval drug utilization, as well as a framework to explore the (cost-)effectiveness of new, often expensive, anti-cancer drugs as used in everyday practice. Copyright © 2011 John Wiley & Sons, Ltd.

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