Service(s) working on this project
Neuromuscular diseases are rare, but often serious. Some of them are fatal. They can affect children and adults, and are characterised by a loss of strength that generates disability and suffering on a daily basis. Few treatments are available, but scientific research is very active and making headway every year. Researchers are constantly looking for patients to take part in therapeutic trials. Joining the register allows us to tell your doctor if a new treatment could be tried to treat your disease.
The term “neuromuscular disease” refers to a group of diseases that affect either the peripheral nerves, the muscles, the neuromuscular junction or the anterior horn cells of the spinal cord. Depending on the classification used, the list of diseases ranges from 62 (INAMI classification) to 371 (ORPHANET classification). These diseases are rare, but they may have a major impact on the autonomy and quality of life of people suffering from the disease.
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 (INAMI) at the request of patients’ associations.
Six neuromuscular disease reference centres (NMRCs) were accredited when the agreement was created, and were joined by a seventh in 2014.
Their objective is defined in Art. 1 of the rehabilitation agreement:
“The final goal of the NMRC is to provide for all aspects related to diagnosis and treatment (both must be addressed in an integrated manner) of neuromuscular diseases within a broad context of expertise, accurate registration and patient-oriented research, and thus to improve significantly 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 Disease Registry (BNMDR) has been in existence since 2008. Its contents are managed by Sciensano, in collaboration with the seven NMRCs. Just as the NMRCs, it is financed by the INAMI. The data are collected on an annual basis.
Its objectives are:
- to facilitate clinical, epidemiological and etiological 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 agreement and planning of health care; and
- to facilitate the recruitment of patients for research on new treatments.
The information contained in the registry covers, for the majority of the diseases, basic data such as age, gender, geographical origin (district), diagnosis, functional status of the person, reference centre where they are being monitored. Two diseases — Duchenne muscular dystrophy and spinal muscular atrophy — are also registered at international level by a network calledTREAT-NMD. In this case, more detailed clinical data are also collected within the registry for subsequent sharing with the various international partners.
The registry and its contents are overseen each year by a scientific committee composed of specialised doctors from the reference centres, a doctor from the College of Medical Directors of the INAMI, and representatives from
BNMDR Scientific Council
D. Beysen (UZ Antwerp)
J. De Bleecker (UZ Ghent)
N. Deconinck (HUDERF, Brussels)
P. De Jonghe (UZ Antwerp)
L. De Meirleir (UZ Brussels)
N. Goemans (UZ Leuven)
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 (WIV-ISP/Sciensano, Brussels)
R. Van Coster (UZ Ghent)
P. Van Damme (UZ Leuven)
P. Van den Bergh (Cliniques universitaires Saint-Luc, Brussels)