What is a Registry?
According to the World Health Organisation, a patient registry is “a file of documents containing uniform information about individual persons, collected in a systematic and comprehensive way, in order to serve a pre-determined scientific, clinical or policy purpose”. Data in a Registry is always anonymous.
There are different kinds of registries and BNMDR is a global registry. A global registry is defined as “a registry focusing on a group of related diseases”. This means that BNMDR regroups all the neuromuscular disease patients in Belgium. We believe that it is important to have a global registry as it is time and resource saving in the preparation of tools and analysis of the data as the expertise is centralized. Also, each rare disease affects a relatively small number of patients and grouping them enables further statistical analysis.