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Published on 23 May 2011

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MS Society unveils world-first Register at start of MS Week

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The MS Society has chosen the start of MS Week to unveil its ground-breaking MS Register, which it believes will produce the first true picture of MS in the UK and the impact the condition has on people’s lives.

Based at Swansea University, it is the first globally, for any condition, to combine information inputted by patients themselves with clinical data and routine NHS information.

The long-term possibilities of what the MS Register could achieve are endless:

  • It could transform the delivery of care and services for people with MS
  • It has the potential to revolutionise the focus of MS research, opening new avenues to explore
  • It could lead to much more accessible and targeted clinical trials for people with MS
  • It will provide new and highly accurate evidence to present to government and anyone working in the field for more targeted funding and support for people with MS
  • It will support future research that could help find the causes of MS and ultimately help find a cure.

But, warns the charity, the MS Register will only work if enough people with MS take part.

Healthcare experts back the MS Register
Support is flooding in from professionals who understand just what a groundbreaking project the MS Register is.

Sir Muir Gray, Chief Knowledge Officer of the NHS and a lifelong advocate of patient empowerment.said: “Is care for people with MS better in Liverpool or Manchester? Which service for MS improved most last year? These questions cannot be answered at present. We know that some hospitals provide excellent care but we do not know what proportion of people with MS in the population they serve are being seen, or whether it is the patients in greatest need. To answer these questions we need to focus on the population of people with MS, and to do this we need the MS register. The development of high value, high quality MS care needs the MS Register.”

Jeremy Chataway, consultant neurologist at the National Hospital for Neurology and Neurosurgery adds: “We have been in the dark for far too long about MS.  The MS Register has the potential to change that, to revolutionise patient care and services for people with MS and to streamline the way we conduct research in this country.”

High profile supporters back the MS Register
At just eight years of age Hairy Biker Dave Myers’ mum was diagnosed with multiple sclerosis. He’s getting behind MS Week, and encouraging others to do the same. He said: “MS Week marks a time to really rev up awareness of MS and help put it on the map. It’s the most common disabling neurological condition affecting young adults and yet there’s still so much we don’t know about it. The launch of this globally unique MS Register has the power to transform care and support for people with MS forever.  If you have MS, don’t miss your chance.  Join the MS Register now and help shape the future.”

Alan Carr, whose close friend Carolyn has MS said: “There’s currently no cure for MS, and to find one, more research is desperately needed. That’s why the MS Register- a powerful research tool- is being unveiled this MS Week. It’s a turning point in knowing more about this potentially devastating condition that affects around 100,000 people in the UK. The full picture of the impact of MS will eventually be clear for the very first time. Become part of the bigger picture and join the MS Register now.”

The MS Society believes that knowledge and information about the impact of MS is where our understanding of cancer was 50 years ago before the Cancer Registry was introduced.  The Cancer Registry has led to numerous breakthroughs and improved health outcomes for people with cancer. With the launch of the MS Register comes the potential for vastly improved care, more targeted research and better service provision for people living with MS. Better, though, than the Cancer Registry, the MS Register will says the charity, provide much more accurate information about the condition by involving people with MS themselves rather than just collecting routine NHS data.

People with MS anywhere in the UK can join the MS Register from today by logging on to www.ukmsregister.org. All information provided will be anonymous and confidential. In addition, five pilot sites across the UK (Belfast, Edinburgh, Swansea, Nottingham and London) will test the technology that combines patient data with clinical data provided by neurologists and routine NHS information.  Once this phase is complete, the MS Register will be rolled out across the UK.



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