Variables Collected
In Denmark public hospitals perform the majority of neurological services. All thirteen Departments of Neurology treating multiple sclerosis (MS) report data into the online notification system on their entire MS-patient-population being treated with disease modifying therapies (DMT).

Registration in our database starts when MS is diagnosed and then at each visit in the MS clinic. With the introduction of DMT’s in 1996 it became mandatory to regularly report data on all patients in treatment. While on treatment patients are monitored in the MS clinics at regular intervals with recording of demographic, clinical and paraclinical data, as well as Expanded Disability Status Score (EDSS), relapses, and side effects. All patients are informed about their data being recorded.

According to directives given by the Danish Data Inspection, there is no requirement for informed consent from the patient for inclusion in the DMSR. The DMSR has to uphold strict security rules for data storage, and the data cannot be used for other purposes than science and statistics.

Personal data
  • ID number
  • Date of birth
  • Gender
Basic disease data
  • Disease course
  • Time of disease onset
  • Time of diagnosis
  • Symptoms at onset
  • Past disease activity
Paraclinical data
  • CSV results at diagnosis (IgG index, oligoclonal bands)
  • Neutralizing antibodies for interferons-beta and natalizumab
  • JCV status, semiannually for patients treated with natalizumab
Patient reported outcomes (PRO)
  • Quality of Life
  • Fatigue
Relapses (every 6-12 months)
  • Date of relapses
  • Steroid treatment
Disability /collected at each visit (every 6-12 months)
  • Expanded Disability Status Score (EDSS)
  • Functional System Score (FSS)
  • Start and end dates of past treatments
  • Current disease-modifying therapies
  • Start date of current treatment
  • Reason for discontinuation of treatment
  • MRI date
  • T2/FLAIR lesions
  • Number of T2/FLAIR lesions
  • Number of new T2/FLAIR since previous scan
  • T1 with Gadolinium
  • Number of enhancing lesions
  • Number of new enhancing lesions since previous scan
Adverse events
  • ICD codes
  • Date of event
  • Seriousness and course
  • Consequence regarding treatment