Dutch researchers have carried out a major epidemiological study to determine the prevalence and incidence of the main neuromuscular diseases in their country:
- incidence was calculated using health data from two registers, one supplied by the network of neuromuscular reference centres (CRAMP register) and the other maintained by the Dutch neuromuscular patient association,
- using a capture-recapture approach, duplicates were eliminated and a more accurate estimate of incidence was made,
- As the contribution of paediatric cases is inherently biased in the CRAMP register, the focus was placed on 15 neuromuscular diseases, with incidence ranging from 0.03 per 100,000 population for the rarest, glycogenosis type V, to 0.9 per 100,000 population for the most common, myotonic dystrophy type 1.
