From Neurology centres

Data from the NHS

The Clinical dataset is captured from NHS Sites on an monthly basis. The content of the minimum dataset has been decided by the Register Clinical Advisory Group. The minimum dataset comprises of:

  • Demographics
    • NHS Number
    • First name
    • Surname
    • Date of Birth
    • Register Study ID
  • Diagnosis Date
  • Onset Date
  • MS Type at Diagnosis
  • MS Type at Visit
  • Relapses no and severity (if appropriate)
  • Date of conversion to SP (if applicable)
  • Current DMT
  • Previous DMT (and reason for changing)
  • EDSS Score
  • Walking Distance
  • Walking Time
  • Onset Symptoms

Clinical Systems

The MS Register recognises that data capture can be fundamentally challenging for hard pressed NHS staff. To that end we have never enforced the use of a particular clinical system, preferring the sites that we work with to make use of the systems currently in place that are used for patient care. It is our intention to remain agnostic and work with whatever data providers are appropriate for quality data capture.

We currently capture data from:

  • iMed
  • OpenEMR
  • Hospital PAS System
  • MS-Access
  • Excel CRF