Why was this work needed?
There are an estimated 100,000 people living with MS in the UK, but we have a relatively poor understanding of the condition from the exact number of people diagnosed to how their MS is affecting them, how they manage and deal with their condition, whether they are in employment and how treatment on offer affects their long term health. This information is vital for researchers to make advances in developing new treatments, management techniques and better provision of services.
The MS Register aims to recruit people in the UK who have been diagnosed with multiple sclerosis, and currently has 14,941 individuals providing information. The Register combines health records from the NHS with information provided directly by people living with MS. By gathering, linking and analysing this data, the Register allows researchers to gain important new insights into the lives of people with this condition.
What were the benefits?
People taking part in the Register have already reported that they tend to have high levels of anxiety and depression. Examining this finding in more detail, research found a reported high level of anxiety in women and high level of depression in men. This new finding has allowed the major UK charity supporting MS, the MS Society, to focus campaigns on this difficult issue. The more data the Register can gather, the more the researchers hope to learn.
What type of data was involved?
The Register uses data from the NHS Clinical sites and information supplied by those with MS as well as routinely collected healthcare data. Participants in the study can have their medical records linked with their self-reported data for a more complete picture. When people with MS register they provide demographic information, details about when they were diagnosed, their employment status as well as filling out measures designed to look at their quality of life. Clinicians input similar kinds of data. The routine healthcare data mainly applies to linkage to Welsh hospital data.
What was the legal basis for accessing the data?
Individuals agree that the information they provide can be used, and that it can be linked with their NHS health records. The combined data is then de-personalised by the Secure Anonymised Information Linkage (SAIL) Databank. The routinely collected data is also all de-personalised. The MS register has received permission for this study through an NHS Research Ethics Committee. All data is stored subject to the Data Protection Act and the Freedom of Information Act. Swansea University is secured by the principles of ISO 27001. Data is accessed by researchers via a secure portal.
Who funded and collaborated on this work?
The UK MS Register is funded by the MS Society. The data processing is done within the Swansea University Medical School.
Where can I go for more information?
- Page updated: 31 August 2017
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