MSBlog Webinar Survey

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MSBlog Webinar Survey

  1. 1. 8/13/13 Webinar - Google Drive https://docs.google.com/a/giovannoni.net/forms/d/1zVABLMpg8wWROC151T2-kxdVSUrPDmKxQUGqn-G9kw0/viewanalytics 1/4 Yes 77 86% No 4 4% Maybe 9 10% Yes 32 36% No 37 41% Maybe 21 23% Monday 20 13% Tuesday 15 10% Edit this form 91 responses View all responses Summary Would you be interested in signing in for a monthly MS Research Webinar? Would you be interested in signing in for a monthly MS Research Twitter Chat? What day of the week would you prefer the webinar to be hosted? gavin@giovannoni.net
  2. 2. 8/13/13 Webinar - Google Drive https://docs.google.com/a/giovannoni.net/forms/d/1zVABLMpg8wWROC151T2-kxdVSUrPDmKxQUGqn-G9kw0/viewanalytics 2/4 Wednesday 28 19% Thursday 33 22% Friday 26 17% Weekend 27 18% Morning 19 18% Afternoon 29 28% Evening 52 50% Other 4 4% What time of day would prefer the Webinar of Twitter Chat to be held? What topics would you like covered by the Webinar or Twitter Chat? Progression of MS, Progressive MS. Secondary progressive MS and potential treatments. Inclusion criteria , why is there an age limit? Progressive MS Cognition I think this is an excellent idea. It increases awareness and gives people a chance to find out more. A recording to be made available afterwards is essential for overseas listeners as well as other people who were unable to listen. Sent to an email address as an attachment. What do you think of a nominal fee of £1 or $1 or €1? Have you thought of a guest speaker/talker or two What is benign MS? What is active MS? What is aggressive MS? comparitive effectiveness of DMTs, drugs in development BG12 and related drugs EBV, progressive MS, cognition, dementia, risk What's new and what's in progress. Can't think of any at the moment ! Upcoming treatments - in general speak. often, the information is too clinical to understand. Also, perhaps what the medical research community is doing collectively/ Is there some organization that is collecting all the efforts to combat MS? I see efforts in US and UK are they duplicating efforts? Is there an info sharing community so scientists can learn from each other? You frequently use the same slides for your presentations, but there are a few of them I don't quite understand without a little more interpretation. So, just going over your most used slides might be helpful. (Like that one with the diamonds?) Updates on the Charcot project. A conversation about the Big Pharma Alternative, if you think there are ways we can be doing more to advocate for that. It would be interesting to be walked through the process for testing on mice, actually. How are they given EAE? How is it activated? What happens to the mouse once it's come down with it. Anything else you find interesting. If you did one on CCVSI, methanol, or curing MS by eating your vegetables, I
  3. 3. 8/13/13 Webinar - Google Drive https://docs.google.com/a/giovannoni.net/forms/d/1zVABLMpg8wWROC151T2-kxdVSUrPDmKxQUGqn-G9kw0/viewanalytics 3/4 wouldn't attend those. Vitamin D and MS Any chance they could be recorded for later viewing? Thanks! I am generally too busy to watch something at a specific time, but would love to see webinars produced by you. How does smoking cause MS? Does smoking cause progressive MS? Future therapeutic targets for inflammation and neurodegeneration Neural repair initiatives Mechanisms of disease (possible causes and transition from inflammatory to degenerative. latest research, best practices COGNITIVE DISORDERS. ACCESSIBILITY TO COGNITIVE RESOURCES BIOMARKERS FOR RELAPSES. NEWER MRI TECHNOLOGY Seems once MS reaches a more progressive phase there are very limited options to slow degeneration. Would like to know of any research in this area. I'm working in the industry/pharmacovigilance: MS in daily life: symptoms, patient's quality of life, progression of disease... new drugs in pipeline, safety of current drugs - The transition through the various stages of MS (benign, CIS, RRMS, SPMS : PPMS) / how to define and manage expectations - Methods and approaches used to engage with different demographic, age and disease duration groups - What influences the work / unemployed / leisure balance ? How can this be modified and is it desirable to modify? Why not top of the month issues? Anything relevant to patients Is PPMS different to RR and SPMS? Why do you think EBV is the cause of MS? Research, dealing with MS symptoms, current and future drugs This is an explanatyion, not a list of topics: I answered no because I have cut down on my MS- related reading, which had become obsessive and excessive. My daughter's current medicine seems to be working and a break from MS is good for all of us. Hoping and praying that the current stability and improvements continue MS progression and how to stop it. ccsvi Question : Would the webinar materials be available to view after the live session, for those unable to attend ? other topics : the variety of mab drugs now available / in development, how they work, what are the risks and how can we move from one to another Diet and MS - particularly link with dairy Halting or slowing progression in SPMS What is happening when no active disease for many years after first relapse Predicting prognosis No preference Fatigue New therapies neuroprotection Have you ever thought of starting up a page on g+ and then having a 'google hangout' - they are very successful for University courses and the Dalai Lama! How does smoking cause MS? Models of ms Your first topic sounds very depressing, btw. Pushing for highly effective treatments on the NHS. Better disease monitoring with MR, potentially including brain volume studies. Pregnancy and MS NABS Cognition MS pathology, Stem Cell therapies, Immune tolerance restoration Secondary Progressive MS Remyelination Research on cause of MS Research on cure Social media and pseudoscience Fampridine and visual symptoms Sexual problems in MS Early aggresive treatment Nutraceuticals clinical trials EBV Anything. Latest research, clinical trials CCSVI Charcot project update Number of daily responses
  4. 4. 8/13/13 Webinar - Google Drive https://docs.google.com/a/giovannoni.net/forms/d/1zVABLMpg8wWROC151T2-kxdVSUrPDmKxQUGqn-G9kw0/viewanalytics 4/4

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