The registry is essential for the development of new treatments that combat neuromuscular diseases
Neuromuscular diseases are rare, but often serious. Some of them are fatal. They can affect children or 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 registry allows us to tell your doctor if a new treatment could be tried to treat your disease.
Join the registry
We therefore encourage as many patients as possible to participate in the registry. If you want to join it, the first step is to check that you are actually suffering from a neuromuscular disease. If this is the case, you will have to register to one of the 7 Belgian reference centres specialised in neuromuscular diseases. The reference centre team will ask you to sign an informed consent document that will give them permission to send certain information about your health to the ISP team of scientists.
All the information contained in the registry is of course anonymous. The specialist doctors in the reference centres and their team enter the information into a highly secured Internet platform called Healthdata. During this operation, the name and surname of the patient disappear, and their code number is encrypted so that no scientist with access to the data can discover the patient’s identity. Only the specialist doctor and the paramedical team who follow the patient have access to the personal information and the entire medical file.
The Belgian registry of neuromuscular diseases, also called BNMDR for “Belgian NeuroMuscular Diseases Registry”, has been in existence since 2008. Its content is managed by the ISP in collaboration with the 7 Belgian reference centres specialising in neuromuscular diseases. Like the reference centres, it is financed by the National Institute for Health and Disability Insurance (NIHDI). Discover the BNMDR.
The objectives of the registry
The objectives of the registry are:
- to assess the incidence of neuromuscular diseases in Belgium and the particularities of patients
- to provide information to public health authorities for care planning
- to support specialised health services
- to improve recruitment for research into new treatments.
The information in the registry
The information contained in the registry covers, for the majority of the diseases, basic data such as age, gender, district, diagnosis, functional status of the person, reference centre where they are being monitored. See the complete list of the type of information contained in the registry. Certain diseases such as Duchenne muscular dystrophy or spinal muscular atrophy are also studied at European level by a network called TREAT-NMD. In this case, more specialised clinical data are also collected. This allows us to exchange information at European level, making it possible to study larger groups of patients and also permitting doctors to liaise with pharmaceutical companies when a new treatment is proposed.
The registry and its contents are supervised each year by a scientific committee composed of the specialised doctors of the reference centres, a doctor from the College of Health Directors of the NIHDI, and representatives of patient associations.
At global level, there are only few countries with a comprehensive registry of information on patients with neuromuscular diseases. Only Canada, Australia, New-Zealand, the Netherlands and Belgium are concerned. Most industrialised countries have specific registries for certain diseases, but no global registry.