Publication Type:Sci. report, recommendation, guidance doc., directive, monograph
Source:Wetenschappelijk Instituut Volksgezondheid, Brussels, Belgium, p.43 (0)
Keywords:BNMDR, Neuromuscular Diseases, Registry
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…
Read Full Abstract
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 aetiological) in the field of neuromuscular diseases”.
This report provides an overview of the data harvested for the year 2013 and outlines the trend identified in the data over the last four years, from 2010 to 2013. The data is entered into the web application by the specialists of the six neuromuscular disease reference centres. The data gathered are descriptive in nature and broken down into two sections: socio-demographic and pathological.
Four thousand and sixty six (4,066) patients were entered into the BNMDR in 2013. 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 and regional differences for other patient characteristics.
We can conclude that this study offers an initial insight into neuromuscular diseases through reference centres in Belgium. The analyses point to a bias in geographical distribution, as well as in other patient characteristics, thereby limiting extrapolations to the target population of patients with NMD in Belgium. Significant disparity still persists between the study population and the target population. However, since its inception, the BNMDR continues each year to improve data quality and the completeness of the registry and to track the evolution of NMD over time.