Forskningsår i kardiovaskulær epidemiologi i et europæisk multicenter studie fra 1.9.23
CARDIOvascular registry MAPping of Europe (CARDIO-MAP): A review of the research potential of health registries in Circle U
Background
As the role of routinely collected electronic health records (EHR) in epidemiological research and pragmatic trials is growing, there is an increasing need to understand their strengths and limitations. The Nordic countries’ tax-supported universal health care systems combined with the tradition of record-keeping and individual-level linkage allow for longitudinal population-based registries covering entire nations for many decades. In France, the National Health Data System is a nationwide registry with individual-level linkage with national registries of hospitalizations (private and public sector), medication prescriptions, and causes of death in primary care since 2006. Typical shortcomings in other countries include limited linkage possibilities, incomplete temporal or geographic coverage, restriction to selected patient groups, and lack of systematic follow-up. Among the examples, the Dutch nationwide hospital registry has existed since 1963, but personal records are anonymized, and therefore not linkable to other data sources. In the United Kingdom, the Clinical Practice Research Datalink has recorded detailed information on both diagnoses and prescriptions in primary care since 1987 but covers only part of the population and lacks information on patients who leave participating practices.
Circle U. is a European University Alliance between nine partners working to facilitate internationalization and create new connections between research, education, and innovation. To facilitate Circle U. collaboration within cardiovascular medicine, Aarhus University’s Cardiovascular Research Network and the Paris Cardiovascular Research Centre at the Institut des Sciences Cardiovasculaires at the Université Paris Cité have recently initiated collaboration with a kick-off meeting in Paris. Cardiovascular epidemiology is a strategic research field in this collaboration. This field can benefit from international collaboration in many ways, including combining expertise, addressing limitations of one study from data in another country, combining data sources from different countries at the individual level, or conducting the same study in parallel in several countries to show consistency and generalizability.
The first step to achieve this goal is to understand the strengths and limitations of the health registries used for cardiovascular research within Circle U. While health registries are commonly described and validated in, e.g., Denmark and the UK, this has been done to a lesser extent or not at all in other countries.
Objectives
We will therefore initiate collaboration between cardiovascular epidemiological research groups at all Circle U. universities to map the European landscape of health registries for use in cardiovascular research.
Methods
The project will be led by a medical student who will dedicate a full year to the project as part of a Research Year at Aarhus University starting 1 September 2023. A descriptive study design will be applied. We will invite an expert in cardiovascular epidemiology within each Circle U. university to contribute. The Research Year student and/or lead investigator aim to visit all universities and standardize the reporting of the characteristics and quality of the different health registries within each country. The data will be published as a review in an international journal.
Contact
Should you be interested in joining our group, please forward (1) a motivated email, (2) CV, and (3) exam overview to morten.schmidt@clin.au.dk.
Morten Schmidt, MD, PhD, DMSc, Associate Professor
References for inspiration
- Schmidt M, Schmidt SAJ, Adelborg K, Sundbøll J, Laugesen K, Ehrenstein V, Sørensen HT. The Danish health care system and epidemiological research: from health care contacts to database records. Clin Epidemiol 2019;11:563–591.
- Laugesen K, Ludvigsson JF, Schmidt M, Gissler M, Valdimarsdottir UA, Lunde A, Sørensen HT. Nordic health registry-based research: A review of health care systems and key registries. Clin Epidemiol 2021;13:533–554.
- Schmidt M, Schmidt SAJ, Sandegaard JL, Ehrenstein V, Pedersen L, Sørensen HT. The Danish National Patient Registry: a review of content, data quality, and research potential. Clin Epidemiol 2015;7:449–490.
- Schmidt M, Pedersen L, Sørensen HT. The Danish Civil Registration System as a tool in epidemiology. Eur J Epidemiol 2014;29:541–549.
- Pottegård A, Schmidt SAJ, Wallach-Kildemoes H, Sørensen HT, Hallas J, Schmidt M. Data Resource Profile: The Danish National Prescription Registry. Int J Epidemiol 2017;46:798–798f.
- Schmidt M, Maeng M, Madsen M, Sørensen HT, Jensen LO, Jakobsen C-J. The Western Denmark Heart Registry: Its Influence on Cardiovascular Patient Care. J Am Coll Cardiol 2018;71:1259–1272.