A validation study from 2012 showed that 98.1 % of patients reported with a diagnosis of MS in the Danish National Patient Register, were recorded in the DMSR, but only 86,9 % of those captured in the DMSR were captured in The Danish National Patient Register, emphasizing the completeness and reliability of the DMSR.
The DMSR is linked with other registers:
To provide an accurate, unbiased estimate of the number of MS-cases in the population, capture- recapture methods are used to ensure completeness of the DMSR.
Neurologists use our online-platform COMPOS in the clinic as it provides an updated picture of the entire disease course illustrated with intuitive graphics. With COMPOS integrated in the workflow, we are ensuring high quality recording of patient visits which in turn ensures scientific validity of the registered data. The DMSR receives a monthly list of all patients assigned to each MS clinic and control of correct case-definition has a high priority for the DMSR. The data collection software has an integrated data verification tool to identify missing or incoherent data.
The total number of registered cases with Clinically Isolated Syndrome (CIS) and MS by the start of 2020 were 30,023 of whom 16,515 were alive, resulting in a prevalence rate of about 284 per 100,000 population. The mean annual number of new cases receiving a MS diagnosis was 649 per year in the period 2010 to 2019.
In total, 7,945 patients (48.1 %) are receiving DMT at the start of May 2020. An annual report is drafted of all patients included in the DMSR.
Treatment history for patients has been registered from 1996. Side effects from treatment have been reported from the beginning and were optimized to contain more details since 2018. Relapses, EDSS and MRI have been regularly reported, increasingly after treatments became available.