Abstract
BackgroundHealth registries may yield important data for epidemiological studies. However, in order to be a valuable source for information, the registered data have to be correct.ObjectivesThe aim of the study was to validate data from the Norwegian Patient Registry (NPR) regarding multiple sclerosis (MS).Materials and MethodsWe obtained data on individuals residing in Nordland County and registered with a MS diagnosis in the NPR or in local hospital records. The NPR data included a unique 11‐digit personal identity number that made it possible to identify the individuals medical records. For each individual registered with MS in the NPR, the hospital record was scrutinized in order to confirm or rule out the diagnosis.ResultsIn Nordland County, 657 individuals had MS 1 January 2017. Of these, 637 were recorded with a correct diagnosis of MS in the NPR, while 59 were recorded incorrectly. Incorrect registration was due to a diagnosis that did not fulfill the diagnostic criteria, later investigation had ruled out MS or it was an error in the diagnostic code registration process. Twenty individuals were not registered with MS in the NPR. These were patients who received their diagnosis before data in the NPR were person identifiable (before 2008), and who later had no MS‐registered contact with public specialist healthcare services. The sensitivity is 0.97, and the positive predictive value is 0.92.ConclusionData from the NPR gave a good estimate of the occurrence of MS, but nearly one in 10 registered diagnoses was not correct.
Highlights
Knowledge of the epidemiology of diseases can give clues to under‐ standing the etiology and risk factors of diseases
The true number of individuals with multiple sclerosis (MS) was determined by count‐ ing and ascertain all subjects identified in the hospital records who fulfilled the criteria for MS in Nordland County per January 1, 2017
We identified 810 individuals with MS, of whom 608 were living in Nordland County per 1 January 2017
Summary
Knowledge of the epidemiology of diseases can give clues to under‐ standing the etiology and risk factors of diseases. There are 18 mandatory national health registries in Norway (Norwegian Institute of Public Health, 2016). These are priceless for health‐related research and innovation, and have pro‐ vided answers to important medical questions (Håberg et al, 2013). The utility of the registries depends on the quality and re‐ liability of the collected data One of these registries is the Norwegian Patient Registry (NPR). All Norwegian citizens have a unique 11‐digit per‐ sonal identity number, an identity designation retained the whole life. This number is included in every hospital record and is linked to a unique number in the NPR. With access to detailed hospital records, we aimed to validate data in the NPR regarding MS in Nordland County
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