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Establishing a Scottish Register of people with MS
MS Society Scotland has committed to undertake a long-term project to create a national register of people with MS in Scotland.
Scotland appears to have the highest number of people with MS in the world. The often quoted number of 10,400 people in Scotland with MS is derived from different one-off research projects. This means that research and service development is done on the basis of estimates. Because of this uncertainty, many important questions about MS in Scotland cannot be answered. For example, how many people currently have MS, and how many new cases are diagnosed each year? Does MS differ between people with different genetic backgrounds? Are pre-birth exposures important? The national register will provide more accurate information to help answer these and other questions.
In May 2008 the Shona Robison, Minister for Public Health, announced initial funding to establish the project within NHS Scotland. In May 2009 a clinical coordinator was appointed to the project and pilots for data collection are now being scoped and setup jointly by NHS Scotland and the MS Society Scotland.
Data will start to be collected from those being newly-diagnosed with MS in January 2010. By November the second phase of the project will start, with information being collected by those previously diagnosed.
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