The South London Stroke Register: Improving the Lives of Stroke Survivors With Data

The South London Stroke Register (SLSR) is an observational population based registry, combining a population incidence study of stroke events in a geographically defined area of South London and a cohort study of these patients followed up over time. The SLSR has been continually ongoing since January 1995 using the WHO ICD-10 definition of stroke. From April 2022, SLSR will use the new ICD-11 definition for case identification to establish a new prospective cohort of patients identified according to the new definition. Follow up of the existing retrospective cohort of current patients will continue, providing data on long term outcomes of stroke through a program of regular patient interviews up to 15 years after stroke. Outcome measures include health outcomes, such as stroke mortality and recurrence, and measures of activities of daily living, quality of life and mental health (cognition, anxiety, depression). The new data collection will include newly selected scales to best capture variation in key health domains and long term outcomes. The change to ICD-11 is expected to lead to an increase in the incidence of stroke and a reduction in the average severity, but the effects of this change have not yet been measured in any population internationally. There is a need for a high quality population-based stroke incidence study to address this gap. Similarly, the factors determining the health of long-term stroke survivors can only be understood using a long running observational cohort study. The overall purpose of this research is to continue and develop the SLSR data collection and analysis to address the needs of stroke patients in the 2020s. The current programme was funded to address the following objectives as part of a broader NIHR programme grant on using data to improve the lives of stroke survivors: * Understand the impact of the ICD-11 new definition of stroke * Define the outcomes and needs of long-term stroke survivors * Support stroke survivors and stakeholders with these detailed data and analyses * Describe the use of formal, informal, and social care services up to 15 years after stroke * Asses the influence of formal, informal, and social care use on stroke recovery and generate patient-level total costs up to 15 years after stroke