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    NIH Conference on SCI Research

    This conference will not be addressing only Cure research, but that will be included. It is open to anyone with an interest in SCI-related research.


    Meeting Date(s):

    Tuesday, February 12, 2019 to Wednesday, February 13, 2019 Location:

    Natcher Conference Center, NIH Campus
    Bethesda, Maryland
    United States Registration Date(s):

    Monday, September 3, 2018 to Monday, February 4, 2019 Sponsored by:

    • National Institute of Neurological Disorders and Stroke (NINDS)
    • National Center for Medical Rehabilitation Research (NICHD/NCMRR)




    https://meetings.ninds.nih.gov/Home/Index/21041

    (KLD)
    Attached Files
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    #2
    It would be interesting to know their definition of 'Disruption'

    Comment


      #3
      Originally posted by niallel View Post
      It would be interesting to know their definition of 'Disruption'
      Look on the page above. It describes the goal as:

      The goal of the 'SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research' conference is to initiate discussion across the SCI research community to launch a new decade of research that disrupts traditional barriers and brings about collaborative efforts to address the key research questions in spinal cord injury research.


      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


        #4
        Originally posted by SCI-Nurse View Post
        Look on the page above. It describes the goal as:

        [/SIZE]

        (KLD)
        Thanks, so they don't yet have the plan for disruption, this conference will come up with how they are going to disrupt?
        Let's hope they come up with something disruptive, because the cynical side of me looks at the agenda and sees no disruption.

        Comment


          #5
          Thanks for sharing. I think I'll attend.
          Co-founder & CTO of MYOLYN - FES Technology for People with Paralysis - Empowering People to Move

          Comment


            #6
            Originally posted by niallel View Post
            Thanks, so they don't yet have the plan for disruption, this conference will come up with how they are going to disrupt?
            Let's hope they come up with something disruptive, because the cynical side of me looks at the agenda and sees no disruption.
            I can't see any disruption either and I don't expect any disruption coming from the speakers.

            Paolo
            In God we trust; all others bring data. - Edwards Deming

            Comment


              #7
              all acute agenda... Terribly impractical... Might even go so far to say a "damn shame". by now it should be a no-brainer to all; especially the scientific community that research and trials on chronic injuries is more feasible
              "That's not smog! It's SMUG!! " - randy marsh, southpark

              "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


              2010 SCINet Clinical Trial Support Squad Member
              Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

              Comment


                #8
                Note that anyone can attend this conference. A perfect "disrupter" would be for a bunch of people with SCI/D attend and bring up these issues in the Q&A sessions.

                (KLD)
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment


                  #9
                  Unfortunately the establishment has no desire to disrupt the status quo.

                  Disruption would be taking current promising research to market in a timely manner, not going back to the labs to refine, or move onto other things that might be interesting to them.
                  Hopefully Matthew and Rob will tell them that.

                  Having said that I see Courtine is going to be there, promising a unicorn when all we want is a pony.
                  Last edited by niallel; 2 Dec 2018, 2:57 PM.

                  Comment


                    #10
                    Open letter to the NIH re. "Launching a decade for disruption in SCI research"

                    Dear all,
                    Today I sent an open letter to Dr. Jakeman from the NIH to express my serious worries regarding the agenda of the upcoming conference: "SCI 2010 - Launching a decade for disruption in SCI research".
                    Three chapters in the letter:
                    - ACUTE injuries first on the Agenda? For us and with us?
                    - CHRONIC SCI ? E-stim and robotics: is this the best we can do?
                    - What about... Disruption into recovery rather than just continuing to make our paralysis more bearable?

                    My feeling is that the SCI community shares these worries. Am I right?
                    Meanwhile the open letter was published on the endParalysis foundation website and you can read it here: https://endparalysis.org/nih-disrupt...jury-research/

                    Thanks for your comments and sharing.
                    Corinne
                    www.endparalysis.org!

                    Comment


                      #11
                      Niall, thanks for your input into this! What other thoughts about distruption, barriers to treatments or changes do we need from the scientific community? We need more from our community to come to this conference and speak up.

                      Comment


                        #12
                        Originally posted by Corinne Jeanmaire View Post
                        Dear all,
                        Today I sent an open letter to Dr. Jakeman from the NIH to express my serious worries regarding the agenda of the upcoming conference: "SCI 2010 - Launching a decade for disruption in SCI research".
                        Three chapters in the letter:
                        - ACUTE injuries first on the Agenda? For us and with us?
                        - CHRONIC SCI ? E-stim and robotics: is this the best we can do?
                        - What about... Disruption into recovery rather than just continuing to make our paralysis more bearable?

                        My feeling is that the SCI community shares these worries. Am I right?
                        Meanwhile the open letter was published on the endParalysis foundation website and you can read it here: https://endparalysis.org/nih-disrupt...jury-research/

                        Thanks for your comments and sharing.
                        Corinne
                        i sure hope he responds... Always been interested in the acute/chronic rationale from their standpoint
                        "That's not smog! It's SMUG!! " - randy marsh, southpark

                        "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


                        2010 SCINet Clinical Trial Support Squad Member
                        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

                        Comment


                          #13
                          Originally posted by Skipow View Post
                          Niall, thanks for your input into this! What other thoughts about distruption, barriers to treatments or changes do we need from the scientific community? We need more from our community to come to this conference and speak up.
                          Hi Rob,

                          I'm going to generalise here, I know there are some great scientists who are exceptions to this - so I apologise to them beforehand.

                          1) In the main I feel the community is not being listened to.
                          A good example would be estim. Why are scientists focusing on walking, when if all the effort was put in to using it from the top down (breathing -> arms -> hands -> trunk bbs etc) people would be getting help sooner, and a gradual progression that corresponds to the priorities of the community.

                          2) Scientists like science, they often have no plan to move discoveries to the clinic.
                          To me disruption would be picking the most promising pieces of research in each area and driving them to conclusion.
                          Research should only be funded if a path to the clinic is defined day 1. If it isn't successful at some point, thats fine - stop it. But if it shows efficacy then they should continue the path.
                          A good example I know of is the UK Innovation grants. They are given to companies to develop new ideas (anything not just medical). However if the company doesn't complete the path then they are barred from applying for grants for years. This would make the scientists focus on a path from day one, they would pick the best idea they had and focus, rather than hop from idea to idea.
                          From the other side, instead of scientists wasting time hunting for grants, the funding should be given to take the idea all the way. That way they can focus on the science and as long as they meet the milestones they will have the security to progress. How much time is wasted today between each phase? If all was agreed upfront then the timeframes could be cut down.

                          3) Acute vs Chronic - To those who are not injured they think splitting the money is fair. However is it a good use of scarce resources? After 2 months everyone is Chronic. I think Corinne covers the other points on this very nicely.

                          Regarding the point about the coming to the conference, disruption would be not having in person conferences.
                          Their argument will be that they need to get together to share info.
                          If they want to share info, they should use slack, facebook, video conferencing.
                          Then the info is not limited to the scientists at the conference - it's available to everyone.
                          The people who benefit from conferences are, the ones who go for a jolly to Hawaii and the conference organisers making money.
                          I wonder how much money that could have been put into research is wasted paying for flights, accommodation, conference fees etc.

                          Just the thoughts that come to mind immediately, I'm sure others here will have plenty more for you to let them know about.

                          thanks,

                          Comment


                            #14
                            Hey niallel, I embedded some responses to what you said in bold.
                            Originally posted by niallel View Post
                            Hi Rob,

                            I'm going to generalise here, I know there are some great scientists who are exceptions to this - so I apologise to them beforehand. As a PhD student who is pursuing a career in SCI rehabilitation research, I can tell you there is no need to apologize. The majority of what you said is true. Most scientists do science for the science first. The ones who are doing for a big purpose or end goal, such as curing SCI, are few and far between, and I feel like they are not vocal enough about calling out the other players who hamper progress towards a cure, including fellow scientists.

                            1) In the main I feel the community is not being listened to. I don't completely agree with your points about estim (epidural I assume)? But I see your main point and can tell you the community certainly isn't being listened to for the most part.
                            A good example would be estim. Why are scientists focusing on walking, when if all the effort was put in to using it from the top down (breathing -> arms -> hands -> trunk bbs etc) people would be getting help sooner, and a gradual progression that corresponds to the priorities of the community.

                            2) Scientists like science, they often have no plan to move discoveries to the clinic. This is often a consequence of a scientists' job. They are required to continually discover new things and publish new, exciting findings that will get their institution headlines. At least in the USA, most of these institutions focusing on SCI are universities. The universities want headlines about scientists publishing in high impact journals. It's the way the biomedical research industry is set up.
                            To me disruption would be picking the most promising pieces of research in each area and driving them to conclusion.
                            Research should only be funded if a path to the clinic is defined day 1. I agree 100%.
                            ...
                            From the other side, instead of scientists wasting time hunting for grants, the funding should be given to take the idea all the way. That way they can focus on the science and as long as they meet the milestones they will have the security to progress. How much time is wasted today between each phase? If all was agreed upfront then the timeframes could be cut down. Scientists are the wrong people to talk to about this idea. Pressure needs to be put on funding agencies (NIH, foundations) and University department chairs to allow for incremental, progressive research and to stop pressuring scientists to meet quotas of publishing X number of articles in X number of high impact journals per year.

                            3) Acute vs Chronic - To those who are not injured they think splitting the money is fair. I was at the Working 2 Walk conference in Vancouver recently. A very surprising number of people with SCIs told me about how they thought acute research SHOULD be prioritized as much as chronic. From an outsider's perspective (I'm able-bodied) I feel the community does not have a consensus or understanding of acute vs. chronic research philosophies.

                            Regarding the point about the coming to the conference, disruption would be not having in person conferences. I'm not sure you understood SCI-Nurse's point...there would be nothing more disruptive then people with SCI showing up at conferences and calling out institutions that are funding/doing research that does not affect the priorities of the community. I know a lot of scientists who have never met someone with an SCI and thus approach SCI as a purely scientific problem based on what their background is or what they perceive life with SCI to be - thus focusing on one narrow area rather than looking at the whole picture. A bunch of people with SCI showing up to a conference and being disruptive would be the #1 way to make these scientists and funders think harder about what they're doing and re-organize their priorities.

                            I wonder how much money that could have been put into research is wasted paying for flights, accommodation, conference fees etc. A lot :/

                            Just the thoughts that come to mind immediately, I'm sure others here will have plenty more for you to let them know about.

                            thanks,

                            Comment


                              #15
                              Thanks Tomsonite, I really appreciate your thoughts. It's good to get validation from someone with an inside view.

                              Originally posted by tomsonite View Post
                              I don't completely agree with your points about estim (epidural I assume)?
                              I know what you mean, I was probably generalising too much to make the point. There are some who are looking at breathing or hand function and I applaud their efforts, but the ones who make all the noise (and get the majority of the money) are shouting about walking.

                              Originally posted by tomsonite View Post
                              Scientists are the wrong people to talk to about this idea. Pressure needs to be put on funding agencies (NIH, foundations) and University department chairs to allow for incremental, progressive research and to stop pressuring scientists to meet quotas of publishing X number of articles in X number of high impact journals per year.
                              Totally agree, this is what I meant by the other side. Disruption needs to come from those making the funding more than it needs to come from the scientists. If those with the money are dictating what the money should do then the scientists will have to follow.

                              Originally posted by tomsonite View Post
                              I was at the Working 2 Walk conference in Vancouver recently. A very surprising number of people with SCIs told me about how they thought acute research SHOULD be prioritized as much as chronic. From an outsider's perspective (I'm able-bodied) I feel the community does not have a consensus or understanding of acute vs. chronic research philosophies.
                              I'm probably a bit jealous when I hear about acute advances, I'd rather it was for everyone. I'll be honest I don't know what their thought process is, so I should find out. If anyone can fill me in as to why people with SCIs have this view it might change my views.
                              Personally I won't fund anything thats purely for acute, and even for trials that are for both I have bad experience. Scientists have taken money for acute and chronic trials, with a promise that both would be done in parallel. Then 6 months later come back and tell us they are still working on the acute because its quicker and will do chronic at a later date. I could fill a book with my emotions on this.

                              Originally posted by tomsonite View Post
                              I'm not sure you understood SCI-Nurse's point...there would be nothing more disruptive then people with SCI showing up at conferences and calling out institutions that are funding/doing research that does not affect the priorities of the community. I know a lot of scientists who have never met someone with an SCI and thus approach SCI as a purely scientific problem based on what their background is or what they perceive life with SCI to be - thus focusing on one narrow area rather than looking at the whole picture. A bunch of people with SCI showing up to a conference and being disruptive would be the #1 way to make these scientists and funders think harder about what they're doing and re-organize their priorities.
                              Sorry, I was generalising again. I understand the point of this conference and SCI-Nurses point.
                              I take the point about scientists meeting with SCI people, Grammy had said this to me before on a previous topic.
                              I had a call with Daniel Lu the other month about the bladder work he is doing. When I told him it was much more important to me to know about when my bladder was full, rather than actually being empty it, he was really interested.
                              On the other side I've spoken with other researchers and they are only interested in what they think we want, not actually what we want.
                              This is what needs disrupting, they believe that because this is the way it's always been done nothing should change. While the money side allows this behaviour nothing will change with these types.

                              Also I was thinking more about all of these conferences in general. The scientists seem to live in a different world when it comes to conferences. One suggested to me that it was a good idea to fly from the UK to Hawaii to sit on a 4 person panel in front of 100 people for 10 minutes would be a good idea.

                              Comment

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