If you are over 18, living in the UK, with a confirmed diagnosis of MS then you can help us increase our understanding of living with MS. Join the study by completing a series of simple questionnaires and returning regularly to update your experiences. Use the website to keep track of your MS over time.
Whether you have your own computer, tablet or smartphone, or you have a friend or relative who is willing to help, then you can join the online part of the Register. All you need is an email address to log in with and to return regularly to the website to answer your questionnaires.
The questionnaires are made up of simple multiple choice questions and we ask you to return every six months to answer the questionnaires again. This gives us a very valuable ‘snap-shot’ of you and your MS over time.
Don’t worry, we’ll send you an email reminder when it’s time to return.
In addition to the online part of the UK MS Register, we are working with a number of NHS clinical sites across the UK. If you attend a clinic at one of these sites then you can also give consent for your medical information to be securely transmitted to the Register and your clinical details can be ‘linked’ to your questionnaire results.
Data linkage is the merging of two or more separate data sets (e.g. outpatient information and questionnaire responses about the same person) for research purposes.
This linked data creates an extremely rich source of information that can be used by researchers to help make sense of MS. For a list of our current partner sites, click here or ask your clinician for more information.
The UK MS Register collects a large amount of data from as many relevant sources as possible. The security and confidentiality of this data is of the highest importance to us and therefore we ensure that we use the highest levels of encryption and security throughout its collection, storage and use.
All data that researchers have access to is anonymised and nothing identifiable is ever released.
You can leave the Register at any point.
Your contribution will lead to a better understanding of living with MS and the knowledge we gain from this study will fuel campaigns for fair, relevant policy and improved healthcare for people living with MS in the UK.
Everyone is different, and everyone experiences MS in a different way.
That’s why your story is so important to us.