Last reply 8 months ago
DEFINE Trial – EarIy termination notice

DEFINE is the name for the long running Tecfidera (Dimethyl Fumurate) trial. You won’t be on it by accident so there is nothing of interest if you are presecribed Tecfidera by your neurologist. There is nothing to be concerned about if you aren’t on the trial.

However, if you are on the trial – monthly or three monthly visists and drug supplied as 2 light blue and white capsules per dose in bulky white blister packs – you will know. I think the trial only runs in 3-4 locations in the UK. Oxford (where I am), Sheffield, Edinburgh and Cambridge. There may be more, but they are research centres only.

I was just contacted by my MS Nurse: The company (Biogen) was going to run the trial for 8 years but have shortened it to 5 years. The national UK ethics people have approved this but hospital level ethics committees can be a bit slower.

From December 2018 Biogen are no longer going to supply the drug free of charge to participants. You MUST have alternate arrangements in place for NHS supplied DMT (disease modifying theray) in order to have uninterrupted drug supply.

So, if you are one of the few and have not made alternate arrangements to see an NHS Neurologist (it may be one and the same as the research neurologist) then call the Nurses and have them get you in front of one ASAP. You may wish to continue on Tec or discuss your options. Either way, it isn’t a bad thing. Biogen just compressed the timescales.

This post is merely a heads-up.



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