Table 1 Overview of assessments in the Swiss Multiple Sclerosis Registry

 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

 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

 Age at first symptoms

X

 Time of first medical doctor visit

X

 Personal experience of diagnostic process

X

 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

X

X

X

X

 Medication for comorbidities

X

X

X

X

 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 change since diagnosis

X

X

 Lifestyle change since diagnosis

X

X

 Physical Activity

X

X

X

 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

 Health related quality of life (EQ-5D-5 L;WHO 5-item well-being index)

X

X

X

X

 Psychological well-being

X

X

X

X

 Depression

X

X

X

 Individual burden (e.g. symptoms,...)

X

X

X

X

 Societal burden

X

X

X

 Economic burden

X