Maximising the Quality of Stroke Care: Reporting of Data Collection Methods and Resourcing in National Stroke Registries: A Systematic Review

Stroke registries are tools for improving care and advancing research. We aim to describe the methodology and resourcing of existing national stroke registries. We conducted a systematic search of the published, peer-reviewed literature and grey literature examining descriptions of data collection methods and resourcing of national stroke registries published from 2012 to 2023. The systematic review was registered in PROSPERO (CRD42023393841). 101 records relating to 21 registries in 19 countries were identified. They universally employed web-based platforms for data collection. The principal profession of data collectors was nursing. All included the acute phase of care, 28% (6) registered the pre-hospital (ambulance) phase and 14% (3) included rehabilitation. 80% (17) collected outcome data. The registries varied in their approach to outcome data collection; in 9 registries it was collected by hospitals, in 2 it was collected by the registry, and 7 had linkage to national administrative databases allowing follow-up of a limited number of end points. Coverage of the total number of strokes varies from 6 to 95%. Despite widespread use of Electronic Health Records (EHRs) the ability to automatically populate variables remained limited. Governance and management structures are diverse, making it challenging to compare their resourcing. Data collection for clinical registries requires time and necessary skills and imposes a significant administrative burden on the professionals entering data. We highlight the role of clinical registries as powerful instruments for quality improvement. Future work should involve creating a central repository of stroke registries to enable the development of new registries and facilitate international collaboration.