What are the aims of the project?
This project aims to estimate the incidence and prevalence of neuromuscular conditions across the UK. It will also build a picture of where patients are, what other health conditions they have, how long they live for and how they use healthcare services.
Why is this research important?
Currently, we lack accurate and up-to-date information of the incidence or prevalence of neuromuscular conditions in the UK. Such information is vital for the work of different stakeholders:
- Healthcare providers like the NHS, who need to appropriately plan for the healthcare needs of people with neuromuscular conditions.
- Charities and other support services, who want to ensure that they are reaching families affected by neuromuscular conditions and providing them with appropriate information and support.
- Regulatory authorities and pharmaceutical companies, who want to know how many people could benefit from emerging treatments.
This research will address this gap by generating accurate incidence and prevalence figures. It will also help to identify whether there are any areas or socio economic groups that have a greater need for support and specialised healthcare services.
What will the researchers do?
The team will interrogate research databases containing anonymous medical records from a large national sample of general practitioners (GPs), linked to hospital episode data. They will estimate how many patients are currently living with a neuromuscular condition and the number of newly diagnosed patients between 2000 and 2018. They will break this down by geographical area and socio-economic factors.
They will also investigate how long patients are living for with neuromuscular conditions and what other health conditions they have. They will describe how patients with neuromuscular conditions use health services i.e. how often they see their GP, how likely it is to be the same GP, how often they are being referred to specialists and admitted to hospital. The researchers will then compare this data to that of the general population.
Further information
If you would like further details about this research project, please contact the MDUK Research Line on 02078034813 or email research@musculardystrophyuk.org
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