A Patient Partner Group is an online meeting with the TONiC team, other participants, and sometimes other collaborators. If you would like to know more about the PPG meetings, click here

There are a multitude of ways to expand your involvement in TONiC. Click here to learn about being part of the PPG groups and other focus groups.Click here to learn about being part of the Lay Summary Group.Click here to learn about being part of our upcoming events.

If you would like to join an online meeting with the TONiC Team, please click here, which will explain how to do this, and give you hints and tips for ease of use.

Your questionnaire data is analysed by our dedicated team and collaborators to try to improve understanding in MS and MND. See the research papers we have written based off of your questionnaires here

Phase 1: The TONiC study began with interviews and discussion groups involving people with neurological conditions, alongside input from healthcare professionals to help shape the research. Not all participants were involved in Phase 1, and some are invited after completion of Phases 2 & 3.Phases 2 & 3: Participants then provided diagnosis and treatment information (Phase 2) and complete detailed questionnaires (Phase 3), helping researchers better understand these conditions and how they change over time. See more about Phase 1,2 & 3 here.Phase 4: Participants are involved in longitudinal follow up questionnaires to allow us to see how the neurological condition changes over time. See more about Phase 4 below:Phase 4 MS Phase 4 MNDWe sometimes undertake sub studies in collaboration with other researchers to expand the scope of TONiC research. Keep an eye on the homepage for the latest news about these here.

We would like more than one questionnaire from you (preferably at least 3) to create a trilogy.A TONiC Trilogy is a participant who has completed and returned at least three questionnaires during Phase 4 of the TONiC study. Their ongoing involvement provides valuable long-term data, helping researchers better understand how symptoms and quality of life change over time and identify factors that may influence these changes. Find out more below:Trilogy MSTrilogy MND

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 72 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.