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Advanced Neurology The South London Stroke Register

Table 1. Data collected and changes over time focusses on neuroimaging for diagnosis and reflects the
increased availability of brain scanning (near universal in
Time point Measurement the study population). The inclusion of milder but detectable
Baseline • Socio-demographic characteristics (ethnic categories cerebrovascular disease will lead to an increase in the reported
shaped in parallel with ONS census categories, number of strokes. The extent of this increase and parallel
educational attainment since 2004)
• Risk factors and medications before stroke (BMI since reduction in stroke severity and post-stroke impairments are
2000) still unknown and estimates are part of ongoing work.
• Stroke severity measures (GCS, swallow assessment,
incontinence and other acute impairments collected 4. Patient and public involvement,
since 1995; NIHSS introduced in 2000) collaboration and data linkage
• Interventions and resource use during admission
(thrombolysis since 2004) Patient and public involvement has been at the centre
• Newly diagnosed risk factors, medications on of the SLSR and shaped its many transformations over
discharge and Early Supported Discharge (since 2022)
• Stroke classification (OCSP classification since 1995, time. The King’s College London Stroke Research Patient
TOAST classification since 1998) and Family Group was established in 2005 and brings
Follow-up • Living conditions together stroke researchers and people affected by stroke.
assessments • Therapies, such as physio-, occupational speech-and- The group has input at all stages, including setting study
language therapy priorities, introducing new data items and informing
• Other resource use (including visits to doctors and funding applications and ethical aspects of the research.
help from friends, family or social services)
• Social networks (since 1999) To encourage further patient involvement, a newsletter
• Newly diagnosed risk factors and current medications has been sent out regularly to each participant since 2006,
(since 1995) summarising current and planned research projects in lay
• Barthel index (level of disability; since 1995) terms and inviting participants to contribute.
• Modified Rankin Scale
• Mortricity Index (1995 to 1998) The SLSR has collaborated with several established
• Frenchay Activities index (since 1995) stroke registries, including the European Registers of
• Hospital anxiety and depression scale, since 1998 Stroke Collaboration, which led to insights into the
• Cognition: MoCA cognitive score (since 2022); 9
Abbreviated Mental Test (since 2000), Mini–Mental delivery of stroke care, costs and outcomes across Europe.
State Examination (before 2000) In its current 5-year programme, collaboration is ongoing
• Health related quality of life: SF12; with the other long-running UK register, the Oxford
EQ5D-5L (since 2022) Vascular Study, for the purpose of data validation by
Abbreviations: ONS: Office for National Statistics, UK; BMI: Body comparing incidence and outcome data and improving
mass index; GCS: Glasgow Coma Scale; NIHSS: National Institutes generalisability.
of Health Stroke Scale; OCSP: Oxford Community Stroke Project;
TOAST: Trial Org 10172 in Acute Stroke Treatment classification; A data linkage with Lambeth DataNet, providing primary
MoCA: Montreal Cognitive Assessment; SF12: 12-Item Short form care data for part of the register participants, has been
survey; EQ-5D-5L: 5-level EQ-5D.
established and we are currently preparing a linkage with
the Sentinel Stroke National Audit Programme, the national
(i) the Montreal Cognitive Assessment, which will provide register of acute stroke. Combining the SLSR’s rich socio-
insights into mild cognitive impairment amongst stroke demographic and outcome data with SSNAP’s detailed data
survivors; (ii) the EQ5D-5L, a measure of health-related on acute care will allow further analyses of the real-world
quality of life with improved sensitivity and reduced ceiling effectiveness of acute care interventions outside clinical trial
effects and (iii) a fatigue severity scale, which was selected settings and socio-demographic inequalities in care.
in close cooperation with our patient engagement group.
Linkage of research data collected in SLSR to routine
Participants also emphasised the importance of limiting health records and administrative databases presents
the length of follow-up interviews. Therefore, for scales significant further possibilities to make use of all available
added, other items were removed, which has to be balanced data in the most efficient way and avoid duplication of data
against the need for consistency of data collection over collection.
time for the purpose of calculating trends, an important
aspect in this long-running study. 5. Core academic output – the changing
epidemiology of stroke and stroke care
In 2022, the SLSR moved from the World Health
Organization (WHO) International Classification of The epidemiology of stroke is at the centre of this
Diseases (ICD)-10 to the ICD-11 definition of stroke, which population-based register. Since its first key study, the
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Volume 4 Issue 1 (2025) 74 doi: 10.36922/an.4771