The Belgian Neuromuscular Disease Registry (BNMDR) was set up at the initiative of the National Institute of Health and Disability Insurance of Belgium (NIHDI) and comes under the rehabilitation convention relating to the care of patients suffering from neuromuscular diseases (NMD). Since the first of January 2008, the Scientific Institute for Public Health (WIV-ISP) and the Reference Centres for Neuromuscular Diseases (NMRC) have joint responsibility for “drawing up a national neuromuscular disease registry …with the aim of facilitating research (clinical, epidemiological, and etiological) in the field of neuromuscular diseases” [4,5].
This report provides an overview of the data harvested for the year 2014 and outlines the trends identified in the data for the past five years, from 2010 to 2014. The data is entered into a web application by the specialists of the seven neuromuscular disease reference centres. The data gathered are descriptive in nature and broken down into two sections: socio-demographic and pathological.
This year, four thousand, three hundred and seventeen (4,317) patients were entered into the BNMDR in 2014. The distribution of these patients among the 62 groups of neuromuscular diseases was similar to that of previous years. The distribution of patients by postal code is still imbalanced, with under-representation in the south of the country, but a slight increase in data from the east of the country.
We can conclude that this study offers an insight into neuromuscular disease through reference centres in Belgium. The analyses point to a bias in geographical distribution, as well as in other patient characteristics, thereby limiting extrapolation of the registry information to the target population of patients with NMD in Belgium. Significant disparity still persists between the study population and the target population.
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