RWE 201 – Sweden – Pioneering the Use of RWD

Cancer Registry:

Sweden has been a pioneer in several real-world data (RWD) and real-world evidence (RWE) initiatives, particularly in the healthcare sector. RWD and RWE refer to data and evidence obtained outside of traditional randomized controlled trials, usually from electronic health records, registries, and other observational sources. Some notable initiatives and resources in Sweden include:

[1] Swedish National Patient Register (NPR): Managed by the Swedish National Board of Health and Welfare, the NPR contains detailed patient-level information on all hospital admissions and outpatient visits in Sweden.

[2] Swedish Prescribed Drug Register: This is a national database that contains information on all prescriptions dispensed to patients in Sweden.

[3] Swedish Cancer Registry: Initiated in 1958, this registry has near-complete coverage of all cancer diagnoses in Sweden.

[4] Quality Registries: Sweden has more than 100 national quality registries that contain individual-level data on patient problems, medical interventions, and outcomes after treatment.

[5] Biobanks: Sweden has a long tradition of collecting tissue samples, which are stored in biobanks. These samples can be used for a variety of RWE studies, including genetic research.

[6] SWEDEHEART: This is a national registry for cardiac care. It’s an example of one of Sweden’s more specific health registries that provides valuable RWD for various cardiac conditions and their treatments.

[7] Swedish Rheumatology Quality Register (SRQ): This registry provides RWD on rheumatic diseases and their treatments.

[8] Stockholm Science City: This initiative aims to make Stockholm and Sweden a platform for health outcomes and real-world evidence in Europe. It leverages the country’s legacy health data, academic excellence, and digital start-ups to create a strong innovation ecosystem.

Sweden’s robust system of registries and biobanks, combined with its universal healthcare system, provides a unique opportunity for generating RWE. This has been critical for drug and device monitoring post-market, epidemiological studies, health economic evaluations, and many other types of research.

The Swedish government and various institutions in the country have recognized the potential of using RWD and RWE for improving patient outcomes, shaping health policies, and guiding clinical decisions. Consequently, they have invested in infrastructure, governance, and collaboration between various stakeholders, including healthcare providers, academia, and the pharmaceutical industry, to ensure the effective use of RWD and RWE.

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