In short
Neuromuscular diseases are rare, but often severe. Some are fatal. They affect both children and adults, and are characterised by loss of muscle strength which leads to disability and suffering on a daily basis. Few treatments are available, but scientific research is ongoing and making headway every year. Researchers are constantly looking for patients to participate in therapeutic trials. Joining the register allows us to inform your physician about new treatments for your disease.
Project description
The term “neuromuscular diseases” refers to a group of diseases that affect either the anterior horn cells of the spinal cord, the peripheral nerves, the muscles, or the neuromuscular junctions. Depending on the classification used, 62 (INAMI classification) to 371 (ORPHANET classification) diseases can be distinguished. These diseases are rare, but may have a major impact on the autonomy and quality of life of affected people.
Care of people affected with neuromuscular diseases in Belgium
In 1999, a rehabilitation agreement was created by the National Institute for Health and Disability Insurance (RIZIV-INAMI) at the request of the patients’ associations.
Six neuromuscular reference centers (NMRCs) were accredited when the agreement was created and were joined by a seventh in 2014.
The objective of the NMRCs is defined in Art. 1 of the rehabilitation agreement:
“The final goal of the NMRC is to provide in all aspects of diagnosis and treatment (both must be addressed in an integrated manner) of neuromuscular diseases in a broad context of expertise, rigorous registration, and patient-oriented scientific research, and thus to significantly improve the prognosis in terms of human functioning, life expectancy, and quality of life for patients and their families.”
The Belgian Neuromuscular Disease Registry (BNMDR)
The Belgian Neuromuscular Diseases Registry (BNMDR) exists since 2008. Its content is managed by Sciensano, in collaboration with the seven neuromuscular reference centers (NMRCs). Like the NMRCs, the registry is financed by the RIZIV-INAMI. Data collection takes place on an annual basis.
The objectives of the BNMDR are:
- to enable clinical, epidemiological, and etiologic research in the field of neuromuscular diseases
- to support and promote the quality of health care in the NMRCs
- to provide information to the public health authorities for management of the rehabilitation agreement and planning of health care in Belgium
- to facilitate patient recruitment for research into new treatments.
The content of the registry covers, for the majority of the diseases, basic data such as the patient’s age, gender, residence (district), diagnosis, functional status, reference center where he/she is monitored. Two diseases — Duchenne muscular dystrophy and spinal muscular atrophy — are also registered at international level by a network called TREAT-NMD (Translational Research in Europe – Assessment and Treatment of Neuromuscular Diseases). In this case, more detailed clinical data are also collected and shared with the various international partners.
The registry and its content are checked annually by a scientific committee composed of specialized doctors from the NMRCs, a doctor from the College of Medical Directors of the RIZIV-INAMI, two members of Sciensano, and representatives from the patients’ associations.
Additionally, a smaller scientific board, composed of specialized doctors from the NMRCs and two members of Sciensano, meets annually to discuss more specific scientific issues.
BNMDR Scientific Council
D. Beysen (Antwerp University Hospital)
J. De Bleecker (Ghent University Hospital)
P. De Jonghe (Antwerp University Hospital)
L. De Meirleir (Brussels University Hospital)
N. Deconinck (HUDERF/UKZKF, Brussels)
N. Goemans (Leuven University Hospitals)
J. Haan (Inkendaal, Vlezenbeek)
A. Maertens De Noordhout (CHR de la Citadelle, Liege)
S. Paquay (Cliniques universitaires Saint-Luc, Brussels)
G. Remiche (Erasmus Hospital, Brussels)
L. Servais (CHR de la Citadelle, Liege)
V. Van Casteren (Sciensano, Brussels)
R. Van Coster (Ghent University Hospital)
P. Van Damme (Leuven University Hospitals)
P. Van den Bergh (Cliniques universitaires Saint-Luc, Brussels)
Patients’ associations
- ABMM (Association Belge contre les Maladies neuroMusculaires) (link is external)
- Spierziekten Vlaanderen (Vlaamse vereniging neuromusculaire aandoeningen) (link is external)
- ALS league Belgium (link is external)
- ABP (Association Belge des Paralysés/Belgische Vereniging voor Verlamden)
- S.G.B. (Groupe de soutien des patients atteints du Syndrome de Guillain-Barré)
Sciensano's project investigator(s):
Service(s) working on this project
Partners
