Prevalence and incidence of neuromuscular conditions in the UK between 2000 and 2019: A retrospective study using primary care data

PLoS One. 2021 Dec 31;16(12):e0261983. doi: 10.1371/journal.pone.0261983. eCollection 2021.


Background: In the UK, large-scale electronic primary care datasets can provide up-to-date, accurate epidemiological information on rarer diseases, where specialist diagnoses from hospital discharges and clinic letters are generally well recorded and electronically searchable. Current estimates of the number of people living with neuromuscular disease (NMD) have largely been based on secondary care data sources and lacked direct denominators.

Objective: To estimate trends in the recording of neuromuscular disease in UK primary care between 2000-2019.

Methods: The Clinical Practice Research Datalink (CPRD) database was searched electronically to estimate incidence and prevalence rates (per 100,000) for a range of NMDs in each year. To compare trends over time, rates were age standardised to the most recent CPRD population (2019).

Results: Approximately 13 million patients were actively registered in each year. By 2019, 28,230 active patients had ever received a NMD diagnosis (223.6), which was higher among males (239.0) than females (208.3). The most common classifications were Guillain-Barre syndrome (40.1), myasthenia gravis (33.7), muscular dystrophy (29.5), Charcot-Marie-Tooth (29.5) and inflammatory myopathies (25.0). Since 2000, overall prevalence grew by 63%, with the largest increases seen at older ages (≥65-years). However, overall incidence remained constant, though myasthenia gravis incidence has risen steadily since 2008, while new cases of muscular dystrophy fell over the same period.

Conclusions: Lifetime recording of many NMDs on primary care records exceed current estimates of people living with these conditions; these are important data for health service and care planning. Temporal trends suggest this number is steadily increasing, and while this may partially be due to better recording, it cannot be simply explained by new cases, as incidence remained constant. The increase in prevalence among older ages suggests increases in life expectancy among those living with NMDs may have occurred.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Charcot-Marie-Tooth Disease / epidemiology
  • Child
  • Child, Preschool
  • Databases, Factual
  • Electronic Health Records
  • Female
  • Guillain-Barre Syndrome / epidemiology
  • Humans
  • Incidence
  • Infant
  • Infant, Newborn
  • Male
  • Middle Aged
  • Muscular Dystrophies / epidemiology
  • Myasthenia Gravis / epidemiology
  • Myositis / epidemiology
  • Neuromuscular Diseases / diagnosis*
  • Neuromuscular Diseases / epidemiology*
  • Prevalence
  • Primary Health Care / statistics & numerical data*
  • Retrospective Studies
  • United Kingdom
  • Young Adult

Grants and funding

The study was funded from a research grant from Muscular Dystrophy UK (Grant Ref 19GROE-PG24-0349-2) awarded to Iain Carey as principal investigator. The funders had no role in the study design, data collection and analysis, decision to publish or preparation of the manuscript.