Many studies have relied on a literature search and the expertise and experience of researchers. However, we wanted to ensure that we were not just repeating what other researchers had contributed to the literature, so we also did one-to-one interviews and focus groups for a wide range of people with MS. We did identify factors which have not been studied before.

We wanted to check that the factors rang true to professionals who are actually working with people with MS. We knew that if those professionals thought we were measuring the wrong things, or had left out important factors, they would be less likely to act on any research findings.

There were several opinions about a long questionnaire pack among the researchers. We wondered about leaving out some factors, or measuring some properly and settling for not measuring some accurately but just asking if people experienced them, or giving half the questionnaire pack to half the volunteers and the other half to the remaining volunteers. In the end we asked the patient partners - who told us to give the whole pack to everyone. Giving out a highly detailed 70 page paper questionnaire booklet of tick box questions was a bold move. Many colleagues told us we would never succeed in finding more than a few hundred people with MS to complete it. We are currently analysing baseline results from over 5000 people with MS who have returned a pack. TONiC is the biggest MS study of its type in the world.

On the 25th May 2018 there was some important changes made to Data Protection Laws and Individual Rights. Your trust is important to us, and we want to make sure you understand what these changes mean for you. So if you'd like to find out more, please read our Data Sharing page here, or view our updated privacy notice on the TONiC study website here. The sponsor for this study is the Walton Centre NHS Foundation Trust, please visit their privacy notice or their website for more information.