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. 2025 Mar 31;7(1):e001000.
doi: 10.1136/bmjno-2024-001000. eCollection 2025.

Epidemiology and 10-year clinical care of juvenile myasthenia gravis in England: a retrospective cohort study

Ali Abbasi  1 , Kerina Bonar  1 , Piotr Zaremba  2 , Anna Scowcroft  3 , Sigrid Nilius  4 , Frank Tennigkeit  4 , Saiju Jacob  5 , Sithara Ramdas  6   7
Affiliations

Epidemiology and 10-year clinical care of juvenile myasthenia gravis in England: a retrospective cohort study

Ali Abbasi et al. BMJ Neurol Open. .

Abstract

Background: Published evidence is limited on the clinical burden of juvenile myasthenia gravis (JMG). We aimed to assess epidemiology and the clinical characteristics of JMG in England.

Methods: We performed a retrospective analysis of patients with newly diagnosed JMG identified in England via primary care and hospital data between 2010 and 2019.

Results: 32 children (aged 2-17 years) with newly diagnosed JMG were included. Prevalence of JMG ranged from 2.2 (95% CI 1.5 to 3.1) in 2012 to 2.5 (95% CI 1.8 to 3.4) per 100 000 in 2018. The annual incidence ranged from 0.8 (95% CI 0.1 to 5.7) in 2015 to 3.8 (95% CI 1.6 to 9.0) per million per year in 2017. Incidence fluctuated in females from 1.6 (95% CI 0.2 to 11.3) in 2016 to 6 (95% CI 2.3 to 16.1) per million per year in 2018. Overall, 20 patients received first acetylcholinesterase inhibitors or corticosteroids with no prior therapy during the study period. During the follow-up period (median, 3.3 years), 17 patients (53.1%) with JMG experienced a hospitalisation. No deaths were observed.

Conclusions: This study confirms the rarity of JMG in England, with steady incidence and prevalence rates over a decade. Further research is required to assess unmet needs in JMG therapy and the importance of effective treatments for this condition.

Keywords: EPIDEMIOLOGY; MYASTHENIA.

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Conflict of interest statement

KB, AS, FT and SN are employees of UCB and/or hold the UCB stock shares. SJ has served as an international advisory board member for Alexion, Alnylam, argenx, Immunovant, Regeneron, and UCB; is currently an expert panel member of the Myasthenia Gravis consortium for argenx and has received speaker fees from Terumo BCT and Eisai Pharmaceuticals. SR has served on advisory board for Novartis, Sarepta, Argenx and Roche, has been investigator in clinical trials for Sarepta, Roche, Wave, Genetx, Argenx, Inois and Santhera, and received Speaker fees for educational meetings from Novartis and Roche. AA and PZ report that contract work with UCB, and have no competing interest.

Figures

Figure 1
Figure 1. Prevalence (A), incidence (B) of juvenile myasthenia gravis (JMG) and (C) incidence of myasthenic hospitalisation in the newly diagnosed cohort in England in years 2010–2019. (A) Prevalence for each year was calculated as point prevalence on 31 December of the year of interest, dividing the number of patients with a diagnosis of MG at any time in their CPRD Aurum/HES by the population (ie, those that are up-to-standard) with data linked to HES on 31 December of that year. (B) To calculate the incidence of JMG, the number of patients with incident diagnosis of JMG (ie, number of patients with a first-ever MG diagnosis between the start and end of that year) was divided by the number of patients at risk (ie, the population registered at all the eligible CPRD Aurum practices, for at least 1 year prior to MG diagnosis, with data linked to HES without JMG diagnosis at the start of that year, excluding prevalent patients. (C) Myasthenic hospitalisation was defined as hospitalisation with MG (excluding hospitalisation for thymectomy) or treatment with IVIg/PLEX. The bars (y-axis on the left) depict the percentage of events, in total and by subgroups, and the line (y-axis on the right) corresponds to the incident rate of event per 100 patient-year. CPRD, Clinical Practice Research Datalink; HES, Hospital Episode Statistics; IVIg, intravenous immunoglobulin; PLEX, plasma exchange.
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