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Variables in the registry

​​Person Identification/Demographics

  • Name and identification number
  • Birthdate
  • Gender
  • Informed consent

Diagnosis

  • Year and month of onset
  • Year and month of diagnosis
  • Disease course
  • Onset symptom
  • Number of relapses or progressive symptom at diagnosis
  • MRI at diagnosis
  • Evoked potentials at diagnosis
  • CSF-analyses at diagnosis

Disease modifying treatment and follow-up

  • Ongoing treatment
  • Any previous medication and reason for changes
  • Any reason for no treatment
  • Any side effects
  • Neutralizing antibody analysis during interferon beta and natalizumab treatment
  • JC-virus screening during natalizumab treatment

Disease activity and clinical scoring

  • Number of relapses
  • MRI examination – and recording of any new lesions
  • Expanded Disability Status Scale (EDSS)
  • Multiple Sclerosis Functional Composite (MSFC)
  • Symbol Digit Modalities Test (SDMT)
  • Symptom checklist – the presence of any symptoms and any treatment of those

Patients reported outcome measures (Not yet included in electronic registration system)

  • Fatigue Severity Scale (FSS)
  • Multiple Sclerosis Impact Scale (MSIS-29)
  • Health-related quality of life assessment by the EuroQol-5D (EQ-5D) (16)

Other variables

  • Co-morbidity
  • Concomitant medication
  • Family members with MS
  • Previous Epstein-Barr virus infection
  • Serum vitamin D levels
  • Smoking habits
  • Vital signs
Sist oppdatert 09.09.2016