Sunday, 23 September 2012

Initial Cleveland Clinic disease-activity free meeting update

I am sitting in the airport lounge in Chicago; frustrated as my flight is delayed. Apparently the pilot's seat has malfunctioned and needs to be replaced; a first for me!

As requested I have uploaded my slides for you to look at. When I get a moment I will upload an actual lecture to YouTube. The meeting went well and the preliminary results of the disease-activity free (DAF) survey were very helpful to illustrate the point that concept of disease-activity free (DAF) status has yet to diffuse into clinical practice. 

The headline take home message from the meeting is that we should probably stick with the current trial definition of DAF, i.e. relapse, disease progression and MRI-activity free with the aim of including other markers of disease activity as they emerge, for example MSer-related outcomes and other MRI metrics. What is clear is that the current definition of DAF would not work for progressive MS; by definition progressive MS is progressing. Another issue that was discussed is when do we need to do a baseline MRI to compare MRIs with in the future? If a DMT has a delayed onset of action you would need to do a baseline scan after the drug starts working for use for future comparisons. In the case of glatiramer acetate this would need to be sometime after 6 months. Another problem that was discussed is the difference between maintenance and induction therapies in relation to DAF. Disease activity on maintenance DMTs, e.g. IFNbeta and GA, is an indication of a sub-optimal response. In comparison, disease activity post induction therapies, for example Alemtuzumab and Cladribine, does not necessarily mean non-response but rather the need to re-treat. The good news is that the meeting will result in a consensus working statement, which will be very important initial step to move the field forward and hopefully to get neurologists to aim on getting MSers with relapsing MS DAF. 

The problem we have in the UK is that our current guidelines to not accept MRI activity as a treatment failure. What can we do about it? That is a story for another day. 


Disease-activity free status talk - Cleveland Clinic 20 Sept 2012 from gavingiovannoni

Again, thank you for responding so quickly to the DAF survey! I hope the slides speak for themselves. 


20 Sep 2012
I am about to travel to the Cleveland Clinic, in Ohio, to attend a meeting on "Freedom from MS Disease Activity"; a subject that is very close to my heart. This concept is well advanced in the fields of oncology, rheumatology and ...

8 comments:

  1. Your slides don't address the issue of quality of life, as far as I can see, Prof G. The hidden impact of MS - things that might not show on a T3 MRI scanner or evidence themselves in an increased EDSS score... such as cognitive impairment, tiredness, depression... where do these things fit into the overall picture?
    Perhaps these hidden impacts predict a worse long term outcome - and some of the drugs you mention are so new as not to reveal the longer impact.
    Also, in a previous comment you talked about the possibility some of the newer MS drugs might have a longer term, hidden other impact - such as a higher rate of Alzheimers.
    This needs more focus on. Because if you can achieve DAF through potent drugs but it causes an equally impactful disease to hit you further down the line... is this a good or a bad thing?
    I worry sometimes that your own fervent desire to see a cure might - on occasion - blind yourself - or your team - to other outcomes.
    You, rightly, demand hard questions at other scientific conclusions. I hope that this fits in with your very high demands!

    ReplyDelete
    Replies
    1. No they don't, but in my post from yesterday I said that we would start off defining DAF as it defined in the trials and then add in other outcomes as the are validated. Patient-related outcomes or PROMS or PROS were very high on the list as was MRI measure of neurodegeneration such as atrophy and gray matter lesions.

      Delete
  2. Prof G,

    Many thanks for the way you share this stuff.

    Out of interest I atended a training course on presenting to audiences. The trainer was excellent, but his first rule was 2-3 PowerPoint slides (detailed graphs better on hand-outs). How did you get through all these slides in the allotted time?


    A couple of quesins - how did they react to our virus theory? (are yous till in a minority?)

    Why can't a patient choose a treatment which will give them the best chance of beng DAF? If ALemtuzumab gets a lcience next year, I'll bettr it will be as a second line treatment. If RRMS next year could I say to the neuro - no, I want to go straight to Alemtuzmab, as I want the best chance of being DAF?
    Where does patient choice fit in (and I'd thoroughly considered all the risks)/ the licensing bodies are men in grey suits who don't seem to understand the needs of the patients)!


    Out of interest, was there any concensus on what current treatment and future treatment might offer the best chance of DAF?


    ReplyDelete
  3. Re 'I hope the slides speak for themselves': I was out of my depth! starting from the Wittgenstein stuff

    ReplyDelete
    Replies
    1. but the talk is making things clearer

      Delete
    2. Wittgenstein was a philosopher who created the intellectual framework for classification systems; we apply his theories on a daily basis.

      Please remember that this talk was not designed or targeted at MSers; maybe in future I should avoid posting them?

      Delete
    3. "...maybe in future I should avoid posting them?"

      NO!!! Please continue posting them, I found it very interesting. Thanks for posting it!

      Delete
  4. Can't someone make an disease-activity free (DAF) App?

    ReplyDelete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.