Sweden’s Quality Registries: A Gold Mine of Real-World Evidence


Thanks to the cooperation of its citizens, Sweden boasts a comprehensive patient registry of electronic health records. Multinational pharma companies increasingly look to these registries to collect real-world evidence, which helps them develop more innovative treatments.  


Combining data from the disease registry with the healthcare databases allows us to build rich data sets describing the effects of disease and treatment on quality of life

Johan Wäborg, Actelion

Sweden is sitting on a gold mine of health data. According to the president of Karolinska Institute, Sweden has access to epidemiologic data going back more than two centuries. Swedes are quite open to allowing their data to be collected, allowing for the development of so-called quality registries. 


According to the official National Quality Register website, “A National Quality Registry contains individualised data concerning patient problems, medical interventions, and outcomes after treatment; within all healthcare production.” This electronic health record system is composed of comprehensive lists of data broken down into four categories: patient, geographical, administrative, and medical. The registries contain data on family links, making it possible to examine hereditary factors in diseases. 


The patient registries are in high demand from researchers, who comb through the intergenerational data observing patterns and links – for example, the link between smoking and increased likelihood of arthritis, obtained from the data of 5,000 sets of twins. The outcome of having access to such a wealth of data is that Sweden has been able to innovate breakthrough products such as catheters, growth hormones and the pacemaker. 


Nearly every multinational pharma company in Sweden has leveraged the country’s quality registries and databases to collect unique real world evidence. PharmaBoardroom has spoken with pharma multinational country managers about how they utilise these registries. 


Johan Wäborg, general manager for the Nordic countries at Actelion, explained that health registries “provide an unparalleled source of real-world evidence which will play an increasingly crucial role in drug development. The personal identification number enables linkage across databases on an individual level, a unique feature allowing the creation of unparalleled patient insight. Actelion leverages this incredible ecosystem through early launches of digital and R&D projects.” 


Wäborg elaborated further on how quality registries are helping the company target pulmonary arterial hypertension (PAH): “This national quality registry is a unique asset for the PAH community. At the moment, there are over 1,400 patients included in this registry, which is a lot relative to the size of the country and for a rare disease like PAH… Combining data from the disease registry with the healthcare databases allows us to build rich data sets describing the effects of disease and treatment on quality of life as well as the influence of socioeconomic factors in a way that is unique in the world.”


Berkeley Vincent, managing director of the Nordics and Baltics at Janssen, stated that his company uses quality registries to evaluate patient response and predict disease risk: “The goal with all the data sets is to see how we can go further, there are always more questions than what a given data set answers; the challenge is to evolve the partnerships and our own technique. We want to further examine how patients respond to treatments in real-world settings and evaluate a wide range of factors, including clinical, quality-of-life, social, and economic criteria, in order to predict the risk of an individual to be diagnosed with a disease. That is the beauty of science, there is always a next question to be answered.”

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