Myasthenic syndromes are a group of diseases affecting the communication between the nerve and muscle. They result in weakness of a variety of muscles including those that move the eyes, those that control swallowing and breathing and those that move arms and legs. Myasthenia gravis (MG), Lambert-Eaton myasthenic syndrome (LEMS) are caused by antibodies targeting the neuromuscular junction.(1, 2) They affect all ages, from infants to the elderly and can have a huge impact on the lives of patients.
These conditions are all rare making research challenging. A new UK database for patients with myasthenia under hospital care is being created to use for future research. To support the use of this database and the interpretation of it’s data in the future, existing estimates regarding myasthenia in the UK, such as how many people we expect to include, who has it, and where they are treated are needed. Therefore, CPRD will be used to calculate how many people in the UK have MG and LEMS, and how many new cases there are each year. As the new database for MG and LEMS will only include patients under hospital care, CPRD will be used to estimate what percentage of patients with myasthenia this covers as some may only be under primary care and could therefore be missed. The number of hospital admissions per year will also be described. These sets of data will be described overall and by demographic and socioeconomic factors.
Myasthenic syndromes are a group of diseases affecting the communication between the nerve and muscle. They result in weakness of a variety of muscles including extraocular, bulbar, respiratory and limbs. The three main categories are myasthenia gravis(MG), Lambert-Eaton myasthenic syndrome(LEMS) and the congenital myasthenic syndromes. The two former are caused by antibodies targeting the neuromuscular junction while the latter is due to a variety of genetic mutations. They affect all ages and can have a huge impact on the lives of patients.(1,2)
These conditions are all rare making research challenging. A detailed UK database for patients with myasthenia under specialist NHS hospital care is being created to generate data for use in future research. To enable the accurate use of the data from the new database in future research, it’s coverage must be validated by comparison to reliable data obtained from a separate source. Therefore, up-to-date estimates of the epidemiology and use of healthcare services for MG and LEMS are required. CPRD will be used to estimate the incidence, prevalence and percentage of patients with MG or LEMS who are under hospital care, in addition to the incidence of hospital admissions. These will be further described by demographics and socioeconomic status.
With this data, it will be possible to estimate the coverage of the new database, as well as the the reliability with which hospital admissions are being recorded. In addition to supporting the new database in the future, descriptions of how the epidemiologythe incidence and prevalence of MG and LEMS, and rate of associated healthcare access in relation to s of MG and LEMS relate to demographic characteristics s and socioeconomic status have not been published in the UK recently and are required to further our understanding of the impact of these diseases in the UK.
1.Incidence and prevalence of MG overall, and by age, sex, ethnicity and Index of multiple deprivation; 2.Incidence and prevalence of LEMS overall, and by age, sex, ethnicity and Index of multiple deprivation; 3.The proportion of patients with MG under secondary care for the treatment of their MG; 4.The proportion of patients with LEMS under secondary care for the treatment of their LEMS; 5.Incidence of hospital admissions per year due to MG overall and by age, sex, ethnicity and Index of multiple deprivation.
Adrian Smith - Chief Investigator - University of Oxford
Mohammad Ashraghi - Corresponding Applicant - University of Oxford
Maria Isabel Leite - Collaborator - University of Oxford
HES Admitted Patient Care;HES Outpatient;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation