Can we reduce or prevent end-organ damage in MS? The DE-FLAMES study. #MSBlog #MSResearch
“End-organ damage in MS; can we prevent it? We are putting in a grant application to test a new class of neuroprotective agent in early MS as an add-on therapy to existing DMTs. If you have not visited this blog for sometime please read the two posts recent posts on this study. We try and make the case for early treatment of progression and explain why we are using brain atrophy, or shrinkage of the brain, as the outcome measure.”
“These images below are from two MSers with RRMS and demonstrates how much brain atrophy or end-organ damage can occur in a short period of time. The aim of our study is to slow or prevent this process from occurring. We need to know if you would be interested in participating in a study addressing this important issue. Thank you.”
“End-organ damage in MS; can we prevent it? We are putting in a grant application to test a new class of neuroprotective agent in early MS as an add-on therapy to existing DMTs. If you have not visited this blog for sometime please read the two posts recent posts on this study. We try and make the case for early treatment of progression and explain why we are using brain atrophy, or shrinkage of the brain, as the outcome measure.”
“These images below are from two MSers with RRMS and demonstrates how much brain atrophy or end-organ damage can occur in a short period of time. The aim of our study is to slow or prevent this process from occurring. We need to know if you would be interested in participating in a study addressing this important issue. Thank you.”
18 Jan 2014
The DE-FLAMES study. #MSBlog #MSResearch “Thank you for responding so positively to yesterday’s post; it clearly needs some more explanation.” “Why combination therapies? There are two ways MS damages and or kills …
17 Jan 2014
Can we stop the slow burn of progressive MS? The DE-FLAMES study. #MSBlog #MSResearch “We need your help. If you have been reading this blog and following the numerous posts on progressive MS, and brain atrophy …
“This investigator-led study, we hope to do, has developed from research done as part of our PROMISE 2010 programme grant. We would therefore like to take this opportunity to thank the National MS Society of the US (NMSS) and MS Society of Great Britain and Northern Ireland for their generous and ongoing support; it is much appreciated and hopefully it will lead to a licensed treatment for progressive MS.”
1st line DMts- ie beta interferon or GA. Therefore, we need a test to see if you are a responder to beta interferon No point in injecting yourself if it wouldn't work anyway.Therefore, GA and laquinimod (Teva laughing all the way to the bank) but who wants to inject themselves daily if they can avoid it. Can't GA be given in any more user friendly way?.Tysabri- with the russian roulette of PML in some instances.Will alemtuzumab be given the green light as a first line treatment? Possibly not in the UK (upto NICE) but maybe elsewhere in the EUThe DEflames study is better than nothing but basing it on the out dated first line therapies we have now seems a waste. Perhaps your colleagues in Germany or Finland can do an add on to alemtuzumab
Unfortunately, we are handicapped by NICE guidance. Therefore, 1st-line injectables are here to stay for awhile. In addition, there is a minority of MSers who do very well on these drugs, but still need and added neuroprotective to help prevent shrinkage of their brains and hence delay clinical SPMS.
Unfortunately, we have had a troll, or bot, that has filled in the survey multiple times. Thankfully, Google Forms makes is easy to detect this kind of aberrant behaviour. We have therefore had to delete over 270 survey responses that came in this afternoon.
I still don't understand why this is being restricted to '1st line' DMTs only – it seems arbitrary. Why not allow 2nd line also – as long as you compare like for like with placebo/active treatment then there's no risk of efficacy of the trial by doing this. Otherwise, you're effectively saying "only those on not very effective medication can participate"?! Surely, your aspiration should be to develop the most effecitve combination treatment – which is likely to be 2nd line + neuroprotector and we'd see this through sub-group analysis. Will you re-think this element of the trial?
The problem is with NICE, as stated above by Prof G. You're correct that if we had a free hand Prof G would be going with a combination of 2nd line DMTs.
Why does NICE come into it? Why not allow those who have already had Alemtuzumab either off label or privately (or those already on Tysabri but still with early RRMS) participate in this combination study – surely that's the most likely to produce impressive results?
Someone has more time than sense….