How many people in the UK are living with MS? How do the different types of MS affect different people? Are there regional differences in how people with MS receive treatment?
Currently, the answers to these fundamental questions are largely unknown. With an estimated 100,000 people living with MS in the UK, more data needs to be gathered about the physical, environmental and social effects for people and carers affected by the condition.
The UK MS Register was launched in 2011 by the Health Informatics Group at Swansea University Medical School and is funded by the MS Society. The fundamental concept is to capture more real world data about living with MS in the United Kingdom. The Register does this in two ways:
People with MS recording information about their MS directly to us through our website via simple questionnaires
Our collaboration with a growing number of hospitals across the UK to link consented website participants’ medical records with their questionnaire responses
This provides an extremely rich bank of data and huge potential for research.