Swansea University’s UK Multiple Sclerosis Register, one of the MS Society’s major investments led by David Ford, Director of Health Informatics at the College of Medicine, has received a boost at the MS Life event in Manchester.
The Register’s unique approach collects and combines electronic data from three vital sources: from hospital diagnostic and treatment centres; from other healthcare organisations; and, significantly, directly from people living with MS. The portal is open to anyone living with MS in the UK and those who sign up are asked to answer a range of important questions relating to their condition, their therapies and how MS affects their lives.
Rod Middleton, UK MS Project Manager said: “At MS Life at Manchester Central the second phase portal with new look questionnaires was launched and more than 250 new people living with MS joined the portal at the two-day event and 861 questionnaires were answered over the two days. It really was an outstanding success.”
These new members add to more than 8,500 existing active Portal members in the project’s 5 pilot areas and their information is now being linked up with information from their electronic hospital records to provide a unique insight into how MS and its treatments affects people’s lives.
Plans are now being developed to roll out the Register across the UK so that, for the first time, the full national picture can be understood, creating a platform to support a whole range of new research studies to help shed light on this complex and often misunderstood condition.
Ed Holloway, Head of Care and Services Research at the MS Society said: “By the interest shown it was clear that people really engaged with the project. A huge amount of hard work went into both the preparation and the event itself, the team went well above and beyond our usual expectations of grant holders. As well as the huge numbers of questionnaires completed over the weekend, I am sure that people will be going back to their branches and contacts and encouraging them to join.”
The team at MS Life
back row: Dr Jeffery Peng, Rod Middleton, Simon Ellwood-Thompson, Gareth Noble, Stephanie Lee
front row: David Ford, Hazel Lockhart and Dr Kerina Jones.
- Wednesday 18 April 2012 01.00 BST
- Wednesday 18 April 2012 12.54 BST
- Swansea University