Muscular Dystrophy UK Neuromuscular Challenge Grant – Epidemiology Study: Estimating the Prevalence and Incidence of Neuromuscular Diseases in the UK

Funding for a UK-wide epidemiological study to estimate the prevalence and annual incidence of neuromuscular conditions. The work will feed into Muscular Dystrophy UK’s new ten-year strategy.

Muscular Dystrophy UK is a UK charity focusing on muscular dystrophy and other related conditions. The charity aims to find treatments and cures for neuromuscular conditions and improve the lives of everyone affected by them.

Muscular Dystrophy UK is inviting proposals for a UK-wide epidemiological study to estimate the prevalence and annual incidence of neuromuscular conditions. The work will feed into the charity’s new ten-year strategy: ‘A World Without Limits – Our Strategy 2025-2035′, which sets out an ambitious vision to transform diagnosis, accelerate access to treatments, and ensure no-one faces their journey alone.

The study will generate robust, stratified data on neuromuscular conditions across the UK to improve understanding of the scale and distribution of these conditions, identify gaps in care, and advocate for lasting change.

This is the first of Muscular Dystrophy UK’s Neuromuscular Challenge Grants. The purpose of the scheme is to provide focused funding in areas of unmet need that will benefit people living with muscle wasting and weakening conditions.

Applicants should aim to:

• Estimate prevalence and incidence across a defined time frame (eg 2020-2025), enabling analysis of longitudinal trends.
• Stratify findings by key demographic variables including age, sex, and ethnicity (where available).
• Explore regional variation in incidence and prevalence across the UK, including devolved nations and, where feasible, more granular geographies such as the NHS regions (or regions regularly used by bodies such as the ONS).
• Use standardised diagnostic codes (eg Read codes, ICD codes) to ensure consistency in case identification.
• Focus on confirmed diagnoses from specialist sources to ensure clinical accuracy.
• Calculate prevalence per 100,000 population, with breakdowns by age (this will help us understand current and future demands on children’s and adults’ services), sex and ethnicity across the UK.
• Where possible we would like to see data linked to socioeconomic status (eg using the index of multiple deprivation) and urban/rural classifications.
• Any forward-looking perspective on future prevalence, if possible, would be welcome.

The use of large-scale electronic health records is encouraged, such as the Clinical Practice Research Datalink (CPRD), which includes data from approximately 13 million patients annually. Alternative data sources may be proposed where they offer clear advantages and are appropriately justified.

Although the purpose of this study will be to support Muscular Dystrophy UK’s ongoing work, applicant(s) are strongly encouraged to publish the outcomes in academic journals.