Advancing neuromuscular disease research through real-world data: Challenges and lessons learned

There has been great interest in using diagnostic, procedural, and billing information collected in health administrative databases to study neuromuscular disease (NMDs), as these data are ideal for performing epidemiological and longitudinal research. However, NMDs can be difficult to identify using health administrative data alone and clinically significant information is often missing. Linking disease registries to health administrative data is an opportunity to overcome these limitations. This is especially relevant as the number and quality of NMD registries has improved dramatically in the last decade. This commentary draws on our experience performing multijurisdictional research linking the Canadian Neuromuscular Disease registry to health administrative databases across five Canadian provinces and will discuss the difficulties associated with performing this work.