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Phase 5 is simply a consent process to allow linkage of data obtained in other phases of TONiC to be linked to other studies or to information from your NHS records. It also gives us permission to inform you about other related studies so you can then decide whether you are interested in them.
For example...
To give an example, a while ago we had the opportunity to collaborate with a company specialising in genetic analysis and they agreed to provide DNA analysis to people with MS in TONIC. They wanted some clinical information as well, which we already had in TONiC.
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We invited people with MS in TONiC to see if they wanted to take part in genetic research and gave them verbal and written information. If they were interested, they signed a Phase 5 consent form (for linkage) and a Phase 6 consent form (for biosamples). We were also open with them about what clinical information about them would be shared.
Please see here if you are interested to see what was shared. The people in the study then donated blood for DNA analysis.
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In future, we may collect DNA from saliva, returned in a special tube by post, which has obvious advantages regarding travel and convenience.
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The other permission in Phase 5 is that we are able to give you information about other studies in future. You can make a free choice about whether you want to take part in them. You are not committing to join any future studies, but you are giving us permission to contact you in future to let you know about them. ​
​​We strongly encourage everyone in TONiC to review the Phase 5 information (see here) and to consent online, (see here) or by post (contact TONiC).
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We cannot email you about other studies that may be of interest if we do not have permission to do so, so you may miss hearing about something. If you are not interested in a future study you are under no obligation to take part, so why not put yourself in the position of being able to stay informed about possible studies of interest?