Friday, 28 November 2014

BartsMS Research Day 2015 -Should We have one?

Following on from the joint UCL research Day in June, 
we are thinking about the return of Barts MS Research Day.

The format must evolve &
the venue from the Summer will change

Can we afford to do it?
Can we have it closer to home?

What should we present?
It is a Research Day that should present 
our Research 
and Not be Just an Information Day

You want to know about Repair? 
but we stopped our Repair work 
because it wasn't working properly
Back to the drawing board
Do we get someone in the guest post?


Our Local Venue (Above) Works for our Purpose
however
is
 72m to the nearest toilet acceptable, 
460m from the nearest underground station acceptable, 
127m to the nearest bus stop acceptable, 
5m, 125m and 270m to the nearest car park acceptable, 
Seven stairs with no hand rail acceptable, 
one ramp into the building with a less than efficient lift acceptable
maybe and solutions can be found 
but one disabled loo-we don't think so!

It is amazing that Paralympic GB is having a bash 
in a venue that only has two suitable Loos

Do you fancy portaloos Outside in the Winter Drizzle?
We think not so back to the drawing board

Should the Annual Barts MS Advent Calendar return?
Rather than days 1-24 we could have letters of the alphabet.
Can we go through the alphabet with twenty four destinations 
where ProfG has been/is going during his sabbatical:-)?

Africa..I know abit lame maybe Abu Dabai or Adelaide
Bergen, Norway or is that Beirut, Lebanon, 
or Boston, USA already
California, USA
Dublin, Eire

Maybe Not. 

10 comments:

  1. Yes you should have a research day.
    I liked the original venue.
    You could have parallel sessions going on - some more information sessions for the newly diagnosed/symptom control etc and some that are purely research based.
    Guest speakers would be great - maybe you could have Skype sessions if it's too far to come e.g. Prof Gold

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    1. I had a diary disaster today and went to the lab rather than the meeting to discuss this...oops sorry, I turned up 10min after it finished 4h and 10min late

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  2. Ditch the MS research day. My hope for these sorts of events was to announce breakthroughs or to give us a timeline for new therapies e.g. repair. What we get is the usual presentations about current and nearly here treatments and their risks/benefits, soem borign stuff about MRIs, some overview of symptomatic research. However, may be 2015 will be a breakthrough - Charcot results, ocrelezumab results, lots of myelin repair trials.... You need to out yourself in the head of an MSer. They want to stop the progression if their disease, they want some repair (or hope of repair), they want some highly effcetive symptomatic treatments - and they want them soon (next 5 years). They want ot hear about genes, Vit D, mice experiments.... these will have no impact on their disease in the near future.

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    Replies
    1. Well that would certainly save us a lot of money. Though I suspect this may be a minority view.

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    2. MD2, put yourself in the position of a PPMSer or SPMSer. At the research days I attended there were many MSers in wheelchairs or using walking aids. How relevant is it to them to hear about some early research on mice, or how effective some of the new DMTS are for those with RRMS? Stopping progression and encouraging repair are what PPMSers and SPMSers want to ehar about. Unfortunately, there's been no breakthroughs. I put my hands up - I'm selfish. I want to regain my old life, to run again, to look forward to the future. Research which might deliver treatments in 20 years time is of no interest to me. You are all nice, committed people, but as of today, Team G has had no impact on my disease and how it effects me.

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    3. Problem is perception, and expectation. The research days are about information sure, but they are about research, our research.

      If you expect us to talk about others research then this is not what they are really about. Neuros often talk about work of others because teams of people across the world work to produce a piece of work. In science it is very different, we don't want to do talks about work done, elsewhere we want to talk about what we do.

      So if you look at repair which all MSers are interested in, you see our research portfolio is relatively thread bear..why. Simply because repair has not been our focus of research or the stuff we have done has not worked and is not worth singing about. In the UK, repair is the domain of Bristol, Cambridge, Edinburgh etc. This is not to say we do not get involved with repair studies, ProfG and the clinical team does However, if you are interested in progression, You would not go to Bristol, Cambridge, Edinburgh, because their cupboard is relatively thread bear on that aspect and London is far more pro-active.

      As to mice studies I am not sure that we have presented anything since the first one that has anything to do with DMT, aiming at stopping RRMS. Everything has been about progressiove MS. However, put simply you are not interested in the research and how drugs of today came about, the results is all you are interested in. It is OK to have this opinion many do. However, anything in mice/rats is years away from someone in MS and if you do not get this, If I were to talk about mouse repair studies the results are still years away from everyone with MS. We need a different way to get this message across, because otherwise we a deluding ourselves and creating too many false expectations.

      I know this summer there was a stand for SMART-MS, which is an ongoing study for people with SPMS, telling you how to see if you could sign up for the study (I am sorry if you were ineligible, if you are not ineligible then there is still time to sign up). I believe none of the planned presentations for these days are about current DMT. We plan to have a session before the meeting to talk about current DMT.

      If you just want to see what's round the corner then look at clinical trials.gov for phase III trials if this is all that can hold your interest. This stuff will be at "MS life". Turning up just hear the "here and now" is not what the Research Day is about. Sorry.

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  3. Sure, go for it, as an mser i'll come.

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  4. Maybe the thing to do is to have the research day every other year?

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  5. I agree with poster above - every other year. Any event should only be held if there is something new to say. Treatments for RRMS have got to a level where inflammation can be controlled. The gaps now are controlling progression, repair and treatments for symptoms. I think the issue highlighted above have to be thought through. What do Team G see as the purpose of the research day v what do patients think such an event should deliver. These things may be quite different. I suspect such events are part of grant funding i.e. You must engage with the patients. From my perspective i'd like to hear what research you are doing, why you are doing it, and how it might help me in the future. I certainly would like to hear about the results of the chrcot project plus the progressive trials.

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    1. "I suspect such events are part of grant funding i.e. You must engage with the patients."
      Nope, this is done off our own bat though in my opinion it should be a condition of every grant that there is public engagement with patients, the vast majority of groups around the world merely pay lip service to public engagement.

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