Overview
The BNMDR project annually collects data from the 7 Belgian neuromuscular reference centers (NMRCs) to monitor the prevalence and course of 62 neuromuscular disease groups. It also supports the quality of care in the NMRCs through benchmarking and facilitates patient recruitment for clinical trials.
Target population: Persons with a neuromuscular disease living in Belgium, followed at a neuromuscular reference center.
Data collection started in 2008 and is still ongoing.
RIZIV/INAMI
Demographics
Dataset
The database includes information on selected sociodemographic characteristics (such as age, gender, place of residence and living status), diagnosis and functional status (including the ACTIVLIM PROM).
Type of data: pseudonymised individual data. Data are not publicly accessible. Specific data (analyses) are provided upon request.
A data request from is in place. Approval of the BNMDR scientific committee is needed. Data requests are discussed with a Group of Experts. An anonymised data set can be shared.
Contact
Rue Juliette Wytsmanstraat 14, 1050 Brussels
https://www.sciensano.be/en