The Trajectories of Outcome in Neurological Conditions (TONiC) study is collecting several types of data, or information: questionnaires, biosamples donated by participants such as blood/saliva/urine/CSF, MRI scans, and the results of clinical tests such as neurological examinations or vision tests. 

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Every person consenting to join TONiC has some basic information collected about them (click here for more details) and is invited to complete a questionnaire pack at home. This is a paper booklet of many questionnaires, typically tick box format.

 

They cover a wide range of factors that were identified as important when TONiC was set up (click here for more details). The pack has a unique study number on it; the analysis uses only unique study numbers and not names.  Analysing these first packs provides cross-sectional information, which you might think of as a snapshot in time of how the person was affected by MS at the time they completed the pack.

 

The prominence of the word ‘trajectories’ as a key part of TONiC reflects our interest in understanding how MS affects people over time.  The dictionary describes trajectories as: the paths followed under the influence of given forces.  We do not yet know all the influences on a person’s MS journey but we are studying this by inviting TONiC participants to update their questionnaire pack every year, again by receiving a booklet to tick through at home. 

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Obviously people with MS may also be interested in other studies and might want to be notified about future research so that they can decide whether or not to take part.  

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Biosamples may be taken in clinic, or at home using special kits – e.g. a small tube for saliva collection.  Nowadays, DNA for genetic research can also be collected using saliva.  Most clinical tests are conducted in hospital. 

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MR scans are done in hospitals, as are lumbar punctures, either as part of that person’s NHS care (a TONiC phase 6 consent means the leftover cerebrospinal fluid after NHS analysis can be kept rather than thrown away).