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Table 1 Overview of assessments in the Swiss Multiple Sclerosis Registry

From: The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research

Topics Layer 2 (one-off Survey) Layer 3 Baseline (one-off Survey) Layer 3 Follow-up 1 (every 6 months) Layer 3 Follow-up 2 (every 12 months) Layer 4 (Medical chart review every 12 months)
Sociodemographic variables
 Personal information X X   X  
 Family and living situation X X   X  
 Education, profession   X   X  
 Working situation   X   X  
 Occupational changes due to MS   X   X  
 Societal context (e.g. disability insurance)   X   X  
Disease course
 First symptoms X     X
 Symptoms ever, current X X X X X
 Symptoms changes (prior and after diagnosis)      X
 Disease stage, type of MS X X X X X
 EDSS-score   X X X X
 Mobility   X   X  
 Relapses   X X X X
 Age of disease progression   X    
Diagnostic process
 Age at first symptoms X     
 Time of first medical doctor visit    X   
 Personal experience of diagnostic process    X   
Treatment
 Disease modifying treatment ever/current X X X X X
 Non-drug therapies X X X X X
 Side effects / adverse events X X X X X
 Therapy stop / interruption X X X X  
 Interventions against side effects   X X X X
 Alternative medicine X X X X  
 Additional medicine / supplements X X X X  
 Cannabis treatment   X X X  
Comorbidities
 Comorbidities   X X X X
 Medication for comorbidities   X X X X
Risk factors and family history
 Weight   X   X  
 Smoking behavior (and exposure)   X   X  
 Alcohol consumption   X   X  
 Nutrition X    X  
 Previous medical history   X    
 Childhood illnesses   X    
 Vaccination   X   X  
 MS family history X     X
 Sun exposure   X    
 Hormonal factors (only women)   X    
Nutrition and Lifestyle
 Nutrition change since diagnosis X    X  
 Lifestyle change since diagnosis X    X  
 Physical Activity X X   X  
Care and medical aids
 Institutions visits X X   X  
 Care types   X   X  
 Contact with healthcare professionals X X   X  
 Specialists consultation X X   X  
 Confidence in specialists   X   X  
 Medical aids   X   X  
 Domestic assistance   X   X  
 Housework   X   X  
 Disclosure of MS   X   X  
Quality of Life
 Health related quality of life (EQ-5D-5 L;WHO 5-item well-being index) X X X X  
Mental health
 Psychological well-being X X X X  
 Depression   X X X  
Burden of disease
 Individual burden (e.g. symptoms,...) X X X X  
 Societal burden   X X X  
 Economic burden     X