Dataset

Registre belge des maladies neuromusculaires

Le projet BNMDR collecte chaque année des données auprès des 7 centres de référence belges spécialisés dans les maladies neuromusculaires (NMRC) afin de surveiller la prévalence et l'évolution de 62 groupes de maladies neuromusculaires. Il soutient également la qualité des soins dans les NMRC grâce à l'analyse comparative et facilite le recrutement de patients pour les essais cliniques.

Vue d'ensemble

Alternative Titles / Acronym
  • BNMDR
Mots-clés
quality of care epidemiology neuromuscular diseases NMD
Langues
ENG, FRA, NLD
Health Themes
neuromuscular disease (Q2246789)
Health Categories
Population-based health data registries (public health registries)
Population Coverage
The population targeted by the BNMDR comprised all individuals in Belgium suffering from a neuromuscular disease and who signed the informed consent. For some diseases, we observe a bias towards more severe patients in need of the multidisciplary care from the reference centers (and thus in convention)
Personal Data Categories
Gender Age Range Country Geographic
Purposes

  • 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.

Provenance
  • Clinicians from 7 neuromuscular reference centres collect the data.

Temporal Information

Temporal Coverage
Début
Update Frequency
ANNUAL
Metadata Dates
Issued:
Modified:

Spatial Information

Geographic Coverage
  • BE
NUTS Codes
http://data.europa.eu/nuts/code/BE

Additional Information

Dataset Types
Personal Data
Applicable Legislation
HDAB
Contact Points
Conforms To
Structured Identifiers

Distributions & Resources

BNMDR terms of data access

https://www.sciensano.be/en/projects/belgian-neuromuscular-diseases-registry#the-belgian-neuromuscular-disease-registry-bnmdr-

Restricted en
Description

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. Regulations for data sharing 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.

Publication Info
License cc-zero1.0
Standards & Languages
Langues en
Conforms To
Distribution Profile
Direct Links
Access URL https://www.sciensano.be/en/projects/belgian-neuromuscular-diseases-registry#the-belgian-neuromuscular-disease-registry-bnmdr-
BNMDR - Data collection definition

https://hddc.blob.core.windows.net/hdfair/dataset/4a34b8d6-5ee7-41ef-9278-5a5c0c39012c/HD_DCD_HDBP0005_BNMDR_v10.0_20250414.xlsx

Restricted en
Publication Info
License cc-zero1.0
Standards & Languages
Langues en
Conforms To
Sample Profile
Direct Links
Download URL Téléchargement
BNMDR | Data dictionary (csvw)

https://raw.githubusercontent.com/sciensanogit/SciensanoDataPortal_distributions/refs/heads/main/datasets/BNMDR/datadic.ttl

Restricted TURTLE en
Description

This file outlines the specifications and parameters for collecting data related to rare diseases within the BNMDR.

Publication Info
License cc-zero1.0
Technical Details
MIME Type http://www.iana.org/assignments/media-types/text/turtle
Standards & Languages
Langues en
Conforms To
Sample Profile
Direct Links
Download URL Téléchargement
quality of care
epidemiology
neuromuscular diseases
NMD