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.
Study Type
OBSERVATIONAL
Enrollment
17,000
Malteser Waldkrankenhaus St. Marien
Erlangen, Germany
RECRUITINGUniversitätsklinikum Erlangen
Erlangen, Germany
RECRUITINGKlinikum am Europakanal
Erlangen, Germany
RECRUITINGName
Time frame: Baseline
Address
Time frame: Baseline
Postal code
Time frame: Baseline
Telephone number
Time frame: Baseline
Gender
Time frame: Baseline
Date of birth
as date
Time frame: Baseline
Date of death
as date
Time frame: After 3 months, after 12 months, then annually until the event occurs. Currently there is a follow-up of 32 years-up
Nationality
Time frame: Baseline
Education
Time frame: Baseline
Employment status
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: Baseline
Living arrangements
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)
Time frame: 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 General practitioner
Time frame: 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
yes/ no
Time frame: 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 contact person
Time frame: 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
Time frame: 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
Time frame: 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)
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)
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
(Modified) Rankin Scale
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)
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Mini-Mental State Examination (MMSE)
Total Score Range: 0-30, higher values indicate better cognitive performance
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Medication
Name of the drug
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Medication
Quantity
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Medication
Dose in milligrams per day
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Charlson Comorbidity Index (CCI)
Total Score Range: 0-33, higher values indicate a worse (greater) comorbid disease burden
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Hypertension
yes/ no
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Diabetes mellitus
yes/ no
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Hypercholesterinemia
yes/ no
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
TOAST-Classification
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
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Medical Outcomes Study Social Support Survey (MOS-SSS)
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
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Short Form 36 Health Survey (SF-36)
Physical health and mental health summary scores, Total Score Range: 0-100, norm-based scoring, higher values indicate a better physical/mental health status
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Barthel Index
Total Score Range: 0-100, higher values indicate better functional independence (less disability)
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Frenchay Activities Index (FAI)
Total Score Range: 15-60, higher values indicate better (greater) frequency/independence in instrumental activities of daily living (IADL)
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Functional Independence Measure (FIM)
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)
Time frame: Baseline, after 3 months, after 12 months, then annually until the end of the study. Currently there is a follow-up of 32 years
Peter L. Kolominsky-Rabas, Univ.-Prof. Dr. med.
CONTACT
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