People with MS register at ukmsregister.org and complete Patient Reported Outcome Measures. They are then reminded by email to come back and complete these questionnaires every three months.
The demonstration version of the participant portal can be seen here : demo.ukmsregister.org
The requirements for entry are that participants must be over the age of 18. live in the UK and have a confirmed diagnosis of MS. Clearly we have no immediate means of validating this diagnosis. For a proportion of the participants however we have a ‘validated’ diagnosis of MS from a Neurologist.
There are 4 ‘core’ questionnaires
Baseline – Demographics, Diagnosis data, Employment, Household composition
Hospital Anxiety and Depression Scale
EuroQol 5D (3l)
Multiple Sclerosis Impact Sale 29v2 + walking scale.
There are then a number of supplementary instruments
Medication, name, start and end dates
Current Symptoms and MS Type