DE-FLAMES 4: survey results

D
Tackling the slow burn of progressive MS: dual action neuroprotection. #MSBlog #MSResearch


“The following are the headline results of our survey in relation to the DE-FLAMES study; a combination therapy study in which we will be adding on a neuroprotective agent to a licensed DMT to reduce brain atrophy in early MS.”


“thank you for taking time to complete this survey; your support has been amazing. There is clearly an unmet need in relation to progressive MS and MS-related brain atrophy. It is reassuring to see that so many of you would be interested in participating and having lumbar punctures as part of the trial. The costings of this trial have come in quite high, simply because of the number of subjects needed in the study and the duration of follow-up (24 months). I suspect that if Dr Gnanapavan, who is leading on this study, gets a green-light to do this study as part of an advanced training fellowship, we will have to find additional funds to support the study. We have just heard the the fellowship funding is capped or limited. This is very unfortunate as we believe this trial is very innovative and will be testing a very interesting molecule with a dual neuroprotective action. It is becoming increasingly difficult to fund investigator studies of this nature outside of industry.”


“If you are interested in reading more about the science behind this study please read the earlier posts on this study.”

New progressive trial: putting out the flames – Multiple Sclerosis 

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 
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 

19 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 

Comments:

  1. I would 100% participate in this study. I think combination therapy is the only way to effectively treat MS. 
  2. Is it possible to conduct a trial to find something to reduce the rate of brain atrophy in SPMS? Would you please comment on the result of the MS-STAT trial and the reduction in brain atrophy that was found, and where does research go from here?
  3. I assume I would have to come off tysabri?
  4. Great work; thank you. 
  5. Previous lumbar puncture left me unable to stand without being sick for ten days. I would love to know why this happened and if it is likely to happen again.
  6. I would be prepared to take any amount of drugs which would help me keep the cognitive function I have left.
  7. I’ve only ever had 1 lumbar puncture back when I was diagnosed in 1998. I honestly didn’t feel a thing & had no problems afterwards. It was only lasted when talking to other people that I realised how lucky I was. 
  8. I am very keen to be involved in any study which looks at brain atrophy prevention. I can’t imagine a study like this could be done in any less that 24 months – longer really.
  9. I’m aware that I don’t fit the criteria for this study but hope that you will keep my details for any future trials that I would be suitable for. Thank you
  10. MRIs yes, LPs bit different though maybe if I was being monitored, having MRIs and getting info about ‘my’ MS it might be worth the trade off.
  11. I was diagnosed with RRMS after an acute relapse in 2004.
  12. I started on beta interferon 1a (Rebif), in May 2007 and haven’t had a relapse since starting the therapy.
  13. I’m aware of the link between axonal loss and the disease becoming progressive, and believe that combination therapy is the way forward in treating the illness.
  14. Havent been on any med true all my ms time where dx 1992,taking 4ap and LDN RIGHT NOW,fixed that on my on,in wheelchair since 2002.
  15. Live in north of Sweden
  16. Will there be restrictions e.g. age? 
  17. Not suitable as a PPMSer, but appreciate the possible value of a trial in this area.
  18. If I was offered a place on the trial I would want to know more about the neuroprotective agent eg possible side effects, is it already used to treat any other illnesses and might it reduce the effectiveness of the DMT I am already taking?
  19. Bring it on!
  20. Seems like a no-brainer to test this theory. Unfortunately I am in USA. Good luck with your study and all you do!
  21. As long as I don’t have to stop taking Tysabri! 
  22. No relapses for 24 doses and counting ……
  23. As long as I can continue with Tysabri which is working for me.
  24. I am extremely interested perhaps more so recently have attended talks by both Prof Giovannoni and Gold, I feel now I do not work I need to be more involved in trials that are suitable for me especially as both my sister and I are MSers.
  25. I would absolutely be interested in this, on the proviso that the neuroprotective drug has a good safety profile – i.e. we are examining efficacy, not it’s safety!

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Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

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