BNMDR (Belgian Neuromuscular Disease Registry)

English (French/Dutch)

Belgium

For most of diseases: Gender, date of birth, living place, diagnosis, functionnal status and reference center. Specifically for Duchenne muscular dystrophy and SMA, additional variables are collected for the TREAT-NMD registry (mutation name, feeding, scoliosis surgery, cardiac and respiratory function, steroids therapy, clinical trials, motor function, family history).

Motor neurone diseases|Spinocerebellar ataxia (SCA)|Spinal muscular atrophy (SMA)

No
No policy exists
Access through collaboration with PI only|Access Committee mechanism|The different physicians filling in the registry are owners of the data; they all have to agree if we need to share part of the data. Ethics approval needs to be reviewed if we collaborate with external sources.
Yes

No
No
Database is web-based
Database is web-based
Data summarised in database

Data collection ongoing
01/01/2008

Batcho CS et al. How robust is ACTIVLIM for the follow-up of activity limitations in patients with neuromuscular diseases? Neuromuscul Disord. 2016 Mar;26(3):211-20. Bladen CN et al. The TREAT-NMD DMD Global Database: analysis of more than 7,000 Duchenne muscular dystrophy mutations. Hum Mutat 2015 Apr;36(4):395-402. Roy A. et al. Early stages of building a rare disease registry, methods and 2010 data from the Belgian Neuromuscular Disease Registry (BNMDR).Acta Neurol Belg. 2015 Jun;115(2):97-104.

1001-5000 clinical cases
3
It collects data regarding every neuromuscular disease in Belgium.
To enable epidemiological research to evaluate the importance of the diseases and the patient characteristics, to provide information to the public health authorities for planning of health care in Belgium, to promote health services for patients having a neuromuscular disease, and to improve recruitment for clinical trials.
BNMDR (Belgian Neuromuscular Disease Registry)

Disease Registers
Belgium
Motor neurone diseases|Spinal muscular atrophy (SMA)|Spinocerebellar ataxia (SCA)
2016