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Table 1 Information collected and instruments used in ALS registry Swabia

From: Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS) - registry Swabia

ALS-case report form Items Source
Symptoms Upper, lower extremities (distal, prox.), bulbar, spastic, cerebellar and further symptoms According to EURALS
Localization HSP, PLS, PMA, SMA, Bulbar, Bulbarparalysis, Flail- Arm-Syndrome, Flail- Leg-Syndrome According to EURALS
Diagnosis Date, proof According to EURALS
Treatment Past, current According to EURALS
Case-Control questionnaire
Sociodemographic status Age, gender, school education, occupation According to EURALS
Care / care givers   
Family history Motor neuron diseases in first and second degree relatives  
Comorbidities List of common chronic diseases and other diseases (history)  
Medication Life-time history of anti-inflammatory drugs  
Smoking Life-time history According to EURALS
Alcohol consumption Life-time history According to EURALS
Diet Diet and nutritional supplements  
Physical activity Life-time history of sports and physical activities According to EURALS
Trauma Life-time history According to EURALS
Injuries Life-time history According to EURALS
Reproductive history (for women) Menstruation, hormons, pregnancy, menopause, operations According to EURALS
Quality of life SF 12 M. Morfeld, I. Kirchberger, M. Bullinger [13]
Subjective quality of life SQoL J. Bernheim (1999) [14]
Neuropsychiatric tests (Hospital Anxiety and Depression Scale) HADS C. Herrmann-Lingen, U. Buss, R. P. Snaith (1995) [15]
Bedside test to assess the function of the frontal brain (Frontal Assessment Battery) FAB Dubois et al. [16]
Montreal Cognitive Assessment MoCA Nasreddine et al. [17]
Coping Achievement Motivation Scale AMS J. W. B. Lang, S. Fries (2006) [18]