SCIFI-PEARL - a national register project for research about COVID-19, health crises and pharmacoepidemiology

SCIFI-PEARL, the largest Swedish linked register database with near real-time data, has addressed key COVID-19 pandemic research questions and continues to study its effects and transition to an endemic disease with seasonal resurgences. Expansion to broader pharmacoepidemiology research is an ongoing priority.

Maintaining this resource is challenging and requires strong infrastructure.

Further resource support is therefore needed to sustain and expand it for future public health benefit.The current proposal extends and enhances the ongoing SCIFI-PEARL project and focuses on consolidation of its database and facilities for data access, collaboration and future research.

We will align with FAIR principles (Findable, Accessible, Interoperable, and Reusable) to produce a step change in utility and benefit.The SCIFI-PEARL (Swedish COVID‐19 Investigation for Future Insights - a Population Epidemiology Approach using Register Linkage) database covers the entire Swedish population.

Data sources include health databases (e.g. national COVID-19 test and vaccination data, National Patient Register, Prescribed Drug Register, 2 regional primary health care databases), quality of care registers (for e.g. heart disease, lung disease, diabetes, emergency care, intensive care, infection), and sociodemographic and social insurance data.

The database is updated quarter-yearly.

The project has developed broad collaborations, with substudies on diverse topics using a range of analysis methods.To enhance the database, the proposed aims are:Data collection1) Streamlining data acquisition processesSystematization, harmonization and documentation of data2a) Improved study metadata to enable researchers to find and evaluate SCIFI-PEARL data and facilitate collaborations.2b) Establishing sustainable data mapping to common data models, to enhance international collaboration.Development of support tools3a) Improved quality control (QC)3b) Variable development and documentation3c) Enhanced platform for collaboration, project management and documentation of analyses.With enhanced data and tools for broad collaboration, this unique national database with will accelerate critical high-quality research on COVID-19 and long-term effects, as well as broader health crisis and pharmacoepidemiology research.

This will directly benefit society and public health, by supporting healthcare prioritization, patient care and societal planning.