How does BNMDR function
The Registry began in 2008 and is funded by the National Insurance of Health and Disability Institute of Belgium (NIHDI).
To create a registry, agreements were signed between the NIHDI, the six Neuromuscular Reference Centres (NMRC) and the Scientific Institute of Public Health (WIV-ISP). A NMRC is an officially recognized centre providing multidisciplinary health services for patients with neuromuscular diseases. There are 2 NMRCs in Brussels, 3 in Flanders, and 1 in Wallonia.
When a patient attends his yearly check-up at his NMRC, the neurologist gathers information from the patient. There are two types of information collected, the socio-demographic data (gender, age, district) and the data related to the disease (disease type, age of first symptoms and diagnosis, and stage of disease). At this point, each patient received a BNMDR-id that is coded through the services of eHealth. The data is then sent to the WIV-ISP for analysis.
The registry also helps identify patients eligible for clinical trials. The registry participates in gathering specific data for Duchenne Muscular Dystrophy and Spinal Muscular Atrophy patients in collaboration with the European Alliance TREAT-NMD.