About Riksstroke

Welcome to Riksstroke – a national quality register for stroke care, primarily aimed at health care staff and decision-makers in health care. We collect, analyze and follow up data on illness and hospital stays. In addition to data from the emergency phase, a questionnaire-based follow-up is also carried out after three months and after 1 year, which provides valuable additional information about stroke patients’ health and functional ability.

Background

Stroke is one of our most common diseases with very large consequences for the patient, relatives and society. The societal costs have been calculated at 18 billion annually. Even moderate progress in the quality of stroke care brings great benefits to the individual and society.

Purpose

Riksstroke contributes to maintaining a high and uniform quality of stroke care throughout the country. Riksstroke reports the content and results of stroke care openly to the public, patients, professions and decision-makers and is a follow-up instrument for national guidelines for stroke care. National stroke forms the basis for register-based stroke research and continuous improvement work.

Inclusion

In Riksstroke, patients with acute stroke (acute ischemic stroke, intracerebral haemorrhages, stroke with unknown ischemia or haemorrhage, subarachnoid haemorrhage) and TIA (transient ischemic attacks) are registered. The patients are treated in hospital or have sought hospital care. 

Extent

Riksstroke collects, analyzes, and monitors data regarding stroke onset and hospital care. Riksstroke registers patients with acute stroke (acute ischemic stroke, intracerebral hemorrhage, or stroke of unknown type—ischemic or hemorrhagic) and TIA (transient ischemic attack). These patients have received hospital care or sought medical attention at a hospital. Since 2020, neurosurgical clinics treating subarachnoid hemorrhage (SAH) have been able to register SAH patients using a dedicated form. Stroke units can also register data for patients who are not referred to a neurosurgical clinic. For stroke cases, a questionnaire-based follow-up is also conducted after three months, providing valuable information on the health and functional ability of stroke patients. In 2025, 19,344 cases of acute stroke were registered. Since Riksstroke’s inception in 1994, 671,685 cases of acute stroke have been included in the registry. Over the past decade, the number of stroke patients has decreased, despite a growing population. In 2025, 8,780 cases of TIA were registered. In total, there are 130,875 registered cases. In 2025, 339 patients diagnosed with subarachnoid hemorrhage were registered.

Participation Rate and Coverage Rate

In 2025, 69 of the 71 hospitals providing acute stroke care were registered in Riksstroke. The option to register TIA cases was introduced in 2010, and the current participation rate stands at 69 out of the 71 hospitals. TIA registration was initially designated as ”voluntary,” but annual reports now emphasize that TIA and stroke should be viewed as a continuum and that quality improvement efforts for TIA are just as important as those for stroke. In the indicators published in March 2018, the National Board of Health and Welfare included indicators (and target levels) for TIA, as well as for the person-centered and structured care pathway. The coverage rate describes the proportion of all hospital care episodes for acute stroke that are registered in Riksstroke. This rate is calculated by comparing the number of first-time stroke events registered in Riksstroke with the number of first-time acute stroke events recorded in the National Board of Health and Welfare’s Patient Register. Readmissions under a stroke diagnosis are excluded from these comparisons due to varying practices regarding the diagnostic codes assigned to patients with stroke sequelae. Consequently, including all stroke diagnoses would result in less reliable data than limiting the analysis to first-time strokes. Validation of the Patient Register has shown that stroke is frequently over-diagnosed in routine clinical practice—meaning a stroke diagnosis is assigned at discharge without definitive evidence to support it. The coverage rate for Riksstroke was 85% in 2025.

Validation of thrombectomy data: Riksstroke vs. EVAS registry

Thrombectomy treatments are recorded in both Riksstroke and the EVAS registry, with the latter containing more detailed information regarding the procedure itself. There is close collaboration between Riksstroke and EVAS concerning thrombectomy treatments. Data validation is performed by cross-referencing the two registries. In 2021, the registries were matched to assess the level of agreement between them. Treatments were identified across the registries using personal identity numbers, admission dates, and procedure dates (within a +/- five-day window). Patients could thus be assigned to one of four groups:

1. Appears only in Riksstroke

2. Appears only in EVAS

3. Appears in both registries (match)

4. Appears in neither registry

It is not possible to calculate the size of the fourth group, but it is assumed to be small given the high coverage rates of both Riksstroke and EVAS. Reasons why a patient might be registered only in Riksstroke include the thrombectomy having been performed abroad or a failure to register the patient in EVAS due to technical issues arising from the registries’ differing registration procedures. Reasons for a patient appearing only in EVAS include technical registration errors (to which the transfer of thrombectomy patients between hospitals can contribute), multiple thrombectomies performed on the same patient, or cases where a patient experienced an early recurrence leading to a thrombectomy but only the initial stroke event was recorded in Riksstroke. Individuals with invalid personal identity numbers, or with reserve or coordination numbers, may also be excluded during the matching process.

Reporting Rate

Riksstroke’s data items generally exhibit high reporting rates. At the national level, data attrition (missing data) for items concerning both the acute phase of stroke and TIA is generally low. Hospitals with attrition exceeding 25% for individual items are flagged in the Annual Report—as indicated in the relevant figure or table captions—to draw attention to the uncertainty of the data.

For key variables, the proportion of patients with missing data is reported. Target levels are displayed on a dashboard, where variables with >25% missing data are specifically flagged for each hospital (a feature introduced in 2018). Target levels achieved with >25% missing data are excluded from calculations for the ”Stroke Unit of the Year” award.

We compare different calculation methods; for instance, proportions are compared based on whether missing data are excluded or included in the denominator. More detailed analyses of missing data are published in scientific journals.

For patient-reported data collected three months post-stroke, the Annual Report does not apply the same flag for high attrition. This is because healthcare staff or a relative of the stroke patient may complete the questionnaire on the patient’s behalf, potentially resulting in a lack of information regarding the patient’s personal experience. The 3-month questionnaire also includes a ”Don’t know” option; this option is excluded from calculations of other proportions but is reported separately when the frequency is notably high.

At the 3-month follow-up, data were available (via a completed questionnaire or confirmation of the patient’s death) for 74% of the patients. Analyses regarding non-respondents have been conducted in some of Riksstroke’s scientific publications. Advanced age, severe stroke, and pre-stroke disability are factors associated with the inability to obtain responses at the 3-month follow-up. In one of the scientific reports on long-term prognosis regarding function and mortality, statistical imputation of missing data was used.

Organization

The operations are led by a national steering committee comprising a chairperson (registry holder) and an interdisciplinary group that includes a representative from the patient organization. The steering committee oversees Riksstroke’s activities—including development, governance, and quality assurance—ensures adherence to financial frameworks, and assists with grant applications. The committee also fosters and/or conducts research based on Riksstroke data. Riksstroke operates under the auspices of Registercentrum Norr (Northern Registry Centre), Region Västerbotten. Most of the practical work is carried out by an administrative office located at Norrland University Hospital. This work is led by the chairperson and a local manager (head of the administrative office) who supports the chairperson. The operations are structured to meet the requirements applicable to a national quality registry.

Stakeholder

Collaboration The development of Riksstroke has taken place over various phases in collaboration with organizations such as the Swedish Society of Internal Medicine, the Swedish Neurological Society, the Swedish Nurses Association, and the Swedish Aphasia Association. Through its representatives on the steering committee, the patient organization STROKE – Riksförbundet has direct influence on Riksstroke’s operations. We have collaborated with the National Board of Health and Welfare (Socialstyrelsen) on a number of follow-up initiatives. For municipal-level comparisons, Riksstroke has collaborated with the National Association for Nurses with Medical Responsibility (MAS). Members of the steering committee have led the National Board of Health and Welfare’s work on new national guidelines for stroke care and have actively participated in the Board’s follow-ups regarding these guidelines. Several members of the Riksstroke steering committee participate in various projects as subject matter experts. They serve on various steering and preparatory groups, including those concerning the National Board of Health and Welfare’s national guidelines for stroke care, the structured and integrated care pathway for stroke, and national and regional stroke working groups. The registry holder represents Sweden in SAP-E (Stroke Action Plan – European Stroke Organisation).

Validation and data quality

Quality reviews are conducted partly through automated checks during data entry via web forms, and partly through statistical process control, where alerts regarding anomalous results are manually verified to determine whether the issue stems from an actual error or natural variation. Following each manual review of anomalous values, a validation report is produced detailing the anomaly, the verification performed, and any measures taken.

Individual hospital coverage rates and automated data-entry checks are regularly reviewed and updated or corrected as necessary (e.g., following changes to forms). Other data validation studies within Riksstroke—including comparisons with medical records—were published in 2015 and 2016 (Buchwald F, Ström JO, Norrving B, Petersson J. Validation of Diagnoses of Transient Ischemic Attack in the Swedish Stroke Register (Riksstroke) TIA-Module. Neuroepidemiology. 2015; 45:40–43; Soderholm A, Stegmayr B, Glader EL, Asplund K, Riksstroke C. Validation of Hospital Performance Measures of Acute Stroke Care Quality. Riksstroke, the Swedish Stroke Register. Neuroepidemiology. 2016; 46:229–234).

Riksstroke has also worked to improve the quality of stroke diagnosis, as various studies and practical experience have shown that some patients are misclassified. Examples of incorrect classification include patients with residual effects from a previous stroke being erroneously assigned an acute stroke diagnosis (the most common reason); patients with an unexplained acute onset of illness receiving a stroke diagnosis without supporting clinical findings; and patients with traumatic brain injuries (traumatic cerebral hemorrhages) being incorrectly diagnosed with stroke.

Riksstroke has revised its 2024 diagnostic quick-reference guide, which provides instructions for assigning diagnoses in accordance with ICD-10. The guide is available on the Riksstroke website and can also be ordered from the Riksstroke secretariat. Members of the Riksstroke steering committee have visited several clinics to hold seminars on improving the quality of stroke diagnosis.

A major validation project was compiled into an internal report in 2021.

There is close collaboration between Riksstroke and EVAS regarding thrombectomy treatments. Data from the two registries are cross-referenced to validate the information.

Development of relevant quality indicators

The indicators in Riksstroke have been progressively modified in line with developments in the stroke field; variables have been phased out and new ones added. A consistent aim has been to limit the number of variables and include only those linked to quality aspects.

A thorough review of the variables was conducted in 2017–2018 as part of the National Board of Health and Welfare’s national guidelines for stroke (guidelines and indicators were published in March 2018). In 2018, the National Board of Health and Welfare also established target levels for stroke and TIA. The target levels used in Riksstroke were revised in 2018 to align with those of the National Board of Health and Welfare.

Riksstroke has a dedicated ”form group” that develops proposals for quality indicators. A reference group comprising representatives from various hospitals is linked to this form group. Indicators are also discussed within the framework of knowledge-based management, where the Riksstroke registry holder is a member of the National Working Group for Stroke.

Effects of the registry’s interventions on care

Riksstroke is essentially the sole data source for monitoring changes in the quality and outcomes of care; data from the registry has provided significant feedback to the healthcare sector and stands as a prime example of how quality registry data can be integrated into the ”quality improvement cycle.” Riksstroke is well integrated into the national system for knowledge-based management of care.

Changes in stroke care have occurred rapidly across many areas, with shifts observed from year to year. Current examples include the use of thrombectomy and anticoagulant treatment following ischemic stroke in patients with atrial fibrillation—areas where dramatic increases have been seen over the past decade. Studies based on Riksstroke data also show improvements in post-stroke outcomes, including survival rates, the risk of recurrent stroke, and functional ability (self-reported ADL). Furthermore, Riksstroke has highlighted areas where rapid improvements have proven more difficult to achieve, such as direct admission to a stroke unit. It has also shed light on significant disparities in the quality of care across different regions—an issue that has attracted considerable attention.

These improvements have been published in numerous scientific articles; please refer to the publication list on the Riksstroke website. Improvements and success factors are also detailed in the National Program Council’s report: *Success Factors in Stroke Care – A Comparative Study of Stroke Care* (SKR).

The most encouraging change observed is a reduction of just over one-fifth in the absolute number of strokes since 2010, despite an aging population and overall population growth. This decline is primarily seen among patients with ischemic stroke and amounts to nearly 3,000 fewer patients in absolute terms. The reduction applies to both first-time strokes and recurrent strokes. Analysis of the reasons behind this significant drop in stroke incidence is ongoing, but preliminary data suggest that healthcare interventions—specifically improved preventive measures—play a major role. The reduction in the number of strokes represents a societal saving of over one billion kronor.

The introduction of thrombectomy has also received strong support from a cost-effectiveness analysis published in 2017, which applied Riksstroke data to the results of randomized trials. The study showed that while each treated case incurred a healthcare cost of approximately 100,000 kronor, it resulted in societal savings of nearly half a million kronor (due to improved prognosis and reduced need for specialized housing and home care services).

Compared to the previous decade, the proportion of patients dependent on assistance with ADL activities at three months fell from 22% to 16% over a ten-year period—representing a reduction of approximately one-quarter in the proportion of severe strokes resulting in permanent disability. Analyses regarding the reasons for this improved prognosis are ongoing, but the increased use of reperfusion (particularly thrombectomy) is believed to have contributed to this trend.

PROMs and PREMs

PROMs and PREMs have been part of Riksstroke for over 20 years and have undergone continuous development. The same questions are asked during follow-ups at three months and one year. These questions cover satisfaction with various aspects of care, functional status, the presence of residual symptoms and their treatment, as well as support from family, the region, and the municipality.

PROMs and PREMs represent subjective assessments and are influenced by factors not directly linked to the quality of care. Factors influencing responses to PROMs and PREMs have been analyzed in several scientific articles based on Riksstroke data; these studies have shown that stroke severity, residual symptoms, depression, pain, and living arrangements are significant factors. Results from Riksstroke and these scientific reports have supported the new recommendation in the National Board of Health and Welfare’s stroke care guidelines: that patients should receive a follow-up visit involving a structured assessment across multiple domains three to six months after the stroke.

Actual use of data in quality improvement work

Riksstroke is the only data source that enables the monitoring of stroke care quality and care inequalities, as well as the identification of areas for improvement. User surveys have shown that Riksstroke data is extensively used in quality improvement initiatives. Common areas of focus include door-to-needle times, thrombolysis, direct admission to stroke units, secondary prevention, and PROMs. Detailed accounts of the hospitals’ improvement initiatives are available on the Riksstroke website.

The introduction of dashboards displaying the hospital’s own data in real-time—now used by the majority of hospitals—has helped raise awareness of the registry’s work among all staff. Several hospitals distribute weekly updates featuring their current data.

Riksstroke serves as a vital foundation for quality improvement in stroke care. Each year, Riksstroke compiles a summary of the hospitals’ improvement initiatives based on Riksstroke data. During 2022–2023, 11 hospitals reported their improvement initiatives to Riksstroke. These reports are available on the Riksstroke website.

Key areas where Riksstroke data was utilized included:

• Nursing care variables regarding oral health, malnutrition, and swallowing assessments

• NIHSS

• Rehabilitation plans

• Adherence to target levels

• Direct admission and stroke unit care components

• Follow-up of care pathways

• Door-to-needle time

• Number of thrombolysis treatments

• Patient-reported outcome measures (PROMs) 3 months post-onset

• Secondary prevention and treatment of atrial fibrillation.

Use of Riksstroke by authorities and other stakeholders

Riksstroke is also utilized by the National Board of Health and Welfare in the process of developing revised guidelines for stroke care. The Board’s new guidelines for stroke care were published in March 2018. This work involves the continuous use of Riksstroke data to identify areas where stroke care is inequitable or fails to align with available evidence. Riksstroke also serves as the basis for the majority of cost calculations performed for the guidelines’ key recommendations. A specific component of the guideline development process involves establishing indicators and setting target levels. The Board’s indicators rely heavily on Riksstroke data, and the target levels established during the process have been coordinated with Riksstroke to ensure consistency. In 2018, the National Board of Health and Welfare published the report ”Evaluation of Stroke Care: Indicators and Basis for Assessment.” This report draws extensively on data from Riksstroke, and the majority of the contributing experts were members of the Riksstroke steering committee.

The Chair of Riksstroke also serves as a member of the National Working Group for Stroke (NAG Stroke; formerly known as the ”National Stroke Council” between 2014 and 2017). NAG Stroke is an integral part of the national knowledge management system and falls under the program area for Diseases of the Nervous System. NAG Stroke has identified key areas for implementation and quality improvement in stroke care; this work entails the provision and analysis of data from Riksstroke. NAG Stroke takes a keen interest in the implementation of thrombectomy in Sweden; the working group receives a quarterly subscription service from Riksstroke providing detailed data on the development of thrombectomy in the country. This is part of the care pathway for stroke and TIA. Implementing this care pathway within the Swedish healthcare system is one of NAG Stroke’s focus areas, and to facilitate an overview, the group also subscribes to care pathway reports. Furthermore, an interactive report has been developed to track the progress of implementation across the country.

Riksstroke also plays a central role in the person-centered and structured care pathway for TIA and stroke. A specific report covering the acute phase of the care pathway monitored by Riksstroke has been developed at the hospital, regional, and healthcare region levels.

Riksstroke provides data to *Vården i Siffror* (VIS). It is also included in the Swedish Research Council’s RUT portal. Internationally, Riksstroke reports data for European comparisons, and the registry holder represents Sweden in the Stroke Action Plan Europe (SAP-E).

Since its inception, Riksstroke has maintained close cooperation with the Swedish Stroke Association (*Strokeförbundet*), the patient organization for stroke. Among other initiatives, a patient report based on Riksstroke data has been produced jointly.

Use of Riksstroke in research

Riksstroke data are used in a very large number of research projects. Publications from Riksstroke are listed on the Riksstroke website

References

The data recorded in Riksstroke are based on scientific evidence and proven experience, and are closely linked to the recommendations in the National Board of Health and Welfare’s National Guidelines for Stroke Care (www.socialstyrelsen.se/regler-och-riktlinjer/nationella-riktlinjer/slutliga-riktlinjer/stroke/). Links to various supporting documents, indicators, and target levels are also provided there. The scientific evidence supporting various stroke care interventions is detailed in the national guidelines, to which reference is made; consequently, scientific references have been omitted from this annual report. Links to other Riksstroke documents on the Riksstroke website have been embedded directly in the text.