Requirements of the National Multiple Sclerosis Disease Registry System: A Review of Experiences

Abstract

Background:  Creation Multiple Sclerosis (MS) disease registries to comprehensive analysis and reduce the burden of the disease is important. The aim of this study was to identify and describe the structures of the MS registries and key features.

Methods: This is a comparative descriptive study. The keywords used for the search including Multiple Sclerosis, MS, Registry system, Data bases and combination them with Boolean operators AND/ OR. The relevant articles published in the English language were extracted, without any time limitation.

Results: The Oslo, European database and German Pregnancy registry are local, Also Croatia and Australia registries are at the hospital and international level. Regular follow-up is done in ten registries. In the eight registries, the diagnostic criteria item is recorded.

Conclusions: Knowledge of the incidence, survival, and death rate of MS disease enables health policymakers to identify at-risk groups and provide regular care for them. MS registry provide valuable information on the occurrence and distribution of MS in a specific area.  So it appears that the identified information elements and use of them in the MS registries are at the core of the national MS control program and can lead to appropriate decisions at the national level.