The South London Stroke Register: Improving the Lives of Stroke Survivors With Data
SLSR
2 other identifiers
observational
2,000
1 country
7
Brief Summary
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
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Apr 2022
Longer than P75 for all trials
7 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
March 16, 2022
CompletedFirst Posted
Study publicly available on registry
March 28, 2022
CompletedStudy Start
First participant enrolled
April 1, 2022
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 1, 2026
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 1, 2026
March 6, 2024
March 1, 2024
4.7 years
March 16, 2022
March 5, 2024
Conditions
Keywords
Outcome Measures
Primary Outcomes (11)
Stroke incidence
Stroke incidence in a geographically defined area of South London
April 2022 - December 2026
Stroke mortality
All-cause mortality rate post-stroke
April 2022 - December 2026
Stroke recurrence
Stroke occurring at least 21 days after index stroke or in different anatomical territory
April 2022 - December 2026
Barthel Index
10-item scale to measure performance in activities of daily living ADL, score 0 - 100, 100=most active
acute phase, 3 months and up to 15 years post-stroke for the retrospective cohort and 5 years post-stroke for the prospective cohort.
Frenchay Activities Index
15-item scale to measure performance in instrumental activities of daily living IADL, score 15 - 60, 60=most active
3 months and up to 15 years post-stroke for the retrospective cohort and 5 years post-stroke for the prospective cohortr
modified Rankin Scale, mRS
measure of degree of disability/dependence after stroke, score 0 - 5, 5 = most disabled
acute phase, 3 months, and up to 15 years post-stroke for the retrospective cohort and 5 years post-stroke for the prospective cohort
Abbreviated Mental Test, AMT-10
screening tool to identify cognitive impairment, score 0 - 10, 0=worse cognitive impairment
acute phase, 3 months, and up to 15 years post-stroke for the retrospective cohort and 5 years post-stroke for the prospective cohort
Montreal Cognitive Assessment, MoCA
screening tool to identify mild cognitive impairment, score 0 - 30, 0=worse cognitive impairment
acute phase, 3 months, and up to 15 years post-stroke for the retrospective cohort and 5 years post-stroke for the prospective cohort
12-Item Short Form Survey (SF-12)
self-reported outcome measure to assess generic health outcomes from patient's perspective, score 0 - 100, higher scores = better physical/mental health
3 months, and up to 15 years post-stroke for the retrospective cohort and 5 years post-stroke for the prospective cohort
Hospital Anxiety and Depression Scale
14 item self-reported measure to assess anxiety and depression in medical patients, score 0 - 42, higher scores = worse anxiety/depression
3 months, and up to 15 years post-stroke for the retrospective cohort and 5 years post-stroke for the prospective cohort
EuroQuol-5D-5L, EQ-5D-5L
outcome measure to evaluate the generic quality of life in 5 dimensions (mobility, self-care, usual activities, pain/discomfort, anxiety/depression), level 11111(full health) - 55555 (worst health)
acute phase, 3 months, and up to 15 years post-stroke for the retrospective cohort and 5 years post-stroke for the prospective cohort
Study Arms (2)
Retrospective Cohort (ICD-10)
All participants with stroke according to WHO ICD-10 definition registered on the SLSR prior to the protocol change in April 2022 will be followed up by interview at 3 months, 1 year, and 5, 10 and 15 years after stroke.
Prospective Cohort (ICD-11)
All participants with stroke according to WHO ICD-11 definition registered on the SLSR following the protocol change in April 2022 will be followed up by interview at 3 months and then annually up to 5 years.
Interventions
All participants will be followed up at defined time points post-stroke by face-to-face or telephone interview or postal questionnaire.
Eligibility Criteria
The study area comprises 27 electoral wards in the Northern part of Lambeth and Southwark and participant's residence within these wards is confirmed by postcode. Information on the population denominator, including sociodemographic details of the catchment area, is obtained through the ONS. The study area comprises a multi-ethnic population of 357,308, of whom about 56% are white, 25% black, 6% Asian and 12% other ethnic groups (according to 2011 population census)
You may qualify if:
- Confirmed stroke (WHO ICD-11 clinical definition)- cerebral ischaemic stroke, primary intracerebral haemorrhage, subarachnoid haemorrhage and stroke not known if ischaemic or haemorrhagic. Formerly defined Transient Ischaemic Attacks with CT/MRI evidence of cerebrovascular disease are classified as stroke under this definition.
- Living in the study area at the time of the first stroke.
- First stroke since 1st January 1995 for enrolled participants. First stroke since 1st April 2022 for updated definition.
You may not qualify if:
- First ever stroke is before 1st January 1995
- Patients' main residence at the time of first stroke is outside the study area.
- Focal neurological signs resolved within 24 hours and no CT/MRI scan reports evidence of cerebrovascular disease (i.e. transient ischaemic attack)
- CT/MRI scans positive for cerebrovascular disease but absence of related focal neurological deficits (asymptomatic cerebrovascular disease)
- brain lesion other than stroke causes the acute symptoms such as cerebral tumour or metastases
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (7)
Barts Health NHS Trust
London, E1 2ES, United Kingdom
University College London hospitals NHS Foundation trust
London, NW1 2PG, United Kingdom
Guy's and St Thomas' NHS Foundation trust
London, SE1 7EH, United Kingdom
King's College hospital NHS Foundation Trust
London, SE5 9RS, United Kingdom
Chelsea and Westminster Hospital NHS Foundation Trust
London, Sw10 9NH, United Kingdom
St George's University Hospitals NHS Foundation Trust
London, SW17 0QT, United Kingdom
Imperial College Healthcare NHS trust
London, W2 1BL, United Kingdom
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Iain Marshall
King's College London, UK
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 15 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
March 16, 2022
First Posted
March 28, 2022
Study Start
April 1, 2022
Primary Completion (Estimated)
December 1, 2026
Study Completion (Estimated)
December 1, 2026
Last Updated
March 6, 2024
Record last verified: 2024-03
Data Sharing
- IPD Sharing
- Will not share