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In order to take part in the FINDeRS-MS study, participants must first enroll in the TONiC study. So what is TONiC?
TONiC is an ongoing national study examining the factors that influence quality of life in patients with neurological conditions. It is one of the largest studies on quality of life in neurological conditions ever performed in the UK.
We hope that TONiC will have a significant and positive impact on the lives of all patients that suffer from neurological diseases such as Multiple Sclerosis and Motor Neurone disease, regardless of symptoms, stage of illness, age or social status.
TONiC is based at the Walton Centre Foundation Trust in Liverpool, UK. Visit the Walton Centre TONiC website here. Researchers can log into the The TONiC Portal here.
Phase 1
Phase 1 of the TONiC study began with individual interviews and discussion groups with people who have been diagnosed with Multiple Sclerosis (MS), Motor Neurone disease (MND) and certain spinal conditions. This section is complete for these conditions. TONiC may also involve other neurological conditions such as stroke and traumatic brain injury (TBI) at a later stage.
Phase 1 also incorporated the Professionals’ Forum. The input and expertise from the healthcare professionals involved in this shaped the following patient-directed stages.
Phases 2, 3, 4 & 5
In Phase 2, study participants consent to have their basic details stored and for a neurologist to confirm the details of their diagnosis and treatment. They also agree to be approached for the next phase of the study.
In Phase 3, participants consent to receive a comprehensive questionnaire pack to complete at home and return by post.
In Phase 4, those participants who returned a Phase 3 questionnaire pack are invited to consent to receive further packs over time.
Phase 5 is simply a consent process to allow linkage of data obtained in phases 2–4 to be linked either to later phases of TONiC or other studies; it is open to anyone who has completed at least phase 3.
In the TONiC analyses, we are measuring a number of factors which influence your quality of life, and assessing how they change over time.
A TONiC trilogy is a person in Phase 4 of the TONiC study who has completed and returned at least three questionnaire packs overall. They are particularly appreciated as their data is very valuable.
Read on to discover why...
In the first graph the green line on the bottom shows time and the blue arrow shows increasing fatigue. You have done two fatigue measures, #1 and #2.
We draw in a trajectory and record this as increasing fatigue.
But trilogy data shows that fatigue increased, then decreased.
The red line shows how misleading two data points would have been. And something important happened about the time shown by the solid red arrow, which seems to have helped your fatigue. We would not know to look for this if we thought the trajectory was the red line.
Get started...
If you wish to participate in these future stages, or want to find out if you are eligible to do so, please refer to the MS map below to check whether your neurological team are named as one of the centres involved in TONiC. If so, please contact the TONiC ‘Champion’ at your site for more information.