Cerebral Infarction, Cerebral Infarction Due to Embolism of Cerebral Arteries, Cerebral Infarction Due to Thrombosis of Cerebral Arteries, Cerebral Vein Thrombosis, Intracerebral Haemorrhage (ICH), Multi-infarct Dementia, Stroke, Not Specified as Haemorrhage or Infarction, Transient Cerebral Ischaemic Attacks and Related Syndromes, Vascular Dementia (VaD)
Conditions
Keywords
Stroke, Erlangen, Germany, Registry
Brief summary
Stroke is a disease that primarily affects older adults and, with an estimated 64,000 deaths in 2024, is one of the leading causes of death in Germany. Estimates of its prevalence and the burden of disease within the German population are therefore essential for calculating future healthcare needs and guide health policy planning. When the first stroke units (SU) began to emerge in Germany in 1994, health insurers raised the question of the total number of stroke patients requiring care. Unfortunately, at that time there were no reliable figures available to determine the nationwide need for stroke units. This marked the birth of the Erlangen Stroke Registry (ESPro). For 32 years (1994-2026), ESPro has been continuously collecting data on the epidemiology, clinical course, and care of stroke and dementia, two of the most common diseases. The ESPro is designed as a regional, population-based registry that includes, as far as possible, all diagnosed strokes-that is, both hospitalized and non-hospitalized patients-regardless of age group or severity of the condition. Patients enrolled in the city of Erlangen undergo close monitoring of their clinical course and are followed up at intervals of 3 and 12 months, and then annually for the rest of their lives. This long-term follow-up enables comprehensive health services research on stroke, a widespread disease. Direct information on the course of the disease, its treatment, and care can be gleaned from registry data and incorporated into preventive medicine, treatment, and care planning.
Interventions
None listed
Sponsors
Study design
Eligibility
Inclusion criteria
* All cases of stroke defined according to WHO criteria, as "rapidly developing clinical symptoms and/or signs of focal, and at times global, loss of cerebral function, with symptoms lasting more than 24 hours or leading to death, with no apparent cause other than that of vascular origin occurring in Erlangen, Bavaria * No restrictions regarding age (provided they are of legal age), socioeconomic circumstance, stroke severity, or prior health status
Exclusion criteria
* Patients with transient episodes lasting less than 24 hours and those with asymptomatic lesions detected by brain imaging ("silent infarcts")
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Employment status | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | — |
| Marital status | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | — |
| Number of children | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | — |
| Name of the health insurance company | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | — |
| Length of residence in the study area | Baseline | — |
| Living arrangements | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Which kind of living arrangement (own home environment, assisted living, nursing home) and who are the people, who live in this arrangement (alone, spouse, children, relatives, others) |
| Telephone number of the General practitioner | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | — |
| Assistance | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | yes/ no |
| Name of the contact person | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | — |
| Telephone number of the contact person | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | — |
| Relationship between the patient and the contact person | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | — |
| National Institutes of Health Stroke Scale (NIHSS) | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Total Score Range: 0-42 (15 items, each scored on 3-5 point ordinal grades, 0 = normal), higher values indicate greater stroke severity (0 = no stroke symptoms, 1-4 minor, 5-15 moderate, 16-20 moderate-to-severe, 21-42 severe) |
| (Modified) Rankin Scale | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Total Score Range: 0-6 (7-point ordinal disability scale), higher values indicate worse (higher) disability (0 = no symptoms, 1 = no significant disability, 2 = slight disability, 3 = moderate disability, 4 = moderately severe disability, 5 = severe disability, 6 = death) |
| Mini-Mental State Examination (MMSE) | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Total Score Range: 0-30, higher values indicate better cognitive performance |
| Medication | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Name of the drug |
| Charlson Comorbidity Index (CCI) | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Total Score Range: 0-33, higher values indicate a worse (greater) comorbid disease burden |
| Hypertension | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | yes/ no |
| Diabetes mellitus | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | yes/ no |
| Hypercholesterinemia | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | yes/ no |
| TOAST-Classification | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Categorical etiologic classification system; it sorts ischemic stroke into 5 mutually exclusive subtype categories: (1) large-artery atherosclerosis, (2) cardioembolism, (3) small-vessel occlusion (lacunar), (4) stroke of other determined etiology, and (5) stroke of undetermined etiology |
| Medical Outcomes Study Social Support Survey (MOS-SSS) | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Total Score Range: Raw sum score: 19-95 (19 items, each rated on the 5-point frequency scale: 1 = none of the time … 5 = all of the time), Transformed index (0-100 scale), higher values indicate better (greater) perceived/available social support |
| Short Form 36 Health Survey (SF-36) | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Physical health and mental health summary scores, Total Score Range: 0-100, norm-based scoring, higher values indicate a better physical/mental health status |
| Barthel Index | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Total Score Range: 0-100, higher values indicate better functional independence (less disability) |
| Frenchay Activities Index (FAI) | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Total Score Range: 15-60, higher values indicate better (greater) frequency/independence in instrumental activities of daily living (IADL) |
| Functional Independence Measure (FIM) | Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years | Total Score Range: 18-126, Subscales: FIM-motor 13-91, FIM-cognitive 5-35, higher values indicate better (greater) functional independence (18 = total dependence, 126 = total independence) |
| Telephone number | Baseline | — |
| Gender | Baseline | — |
| Date of birth | Baseline | as date |
| Date of death | After 3 months, after 12 months, then annually until the event occurs. Currently there is a follow-up of 32 years-up | as date |
| Nationality | Baseline | — |
| Education | Baseline | — |
| Name | Baseline | — |
| Address | Baseline | — |
| Postal code | Baseline | — |
Countries
Germany