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Thread: NIH Conference on SCI Research

  1. #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.

  2. #12
    Senior Member lunasicc42's Avatar
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    Quote 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
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  3. #13
    Quote 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,

  4. #14
    Hey niallel, I embedded some responses to what you said in bold.
    Quote 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,

  5. #15
    Thanks Tomsonite, I really appreciate your thoughts. It's good to get validation from someone with an inside view.

    Quote 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.

    Quote 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.

    Quote 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.

    Quote 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.

  6. #16
    Here is your chance to express your opinion and voice for the consumer panel. The North American Spinal Cord Injury Research Consortium (NASCIC) is looking to gather information from the community on issues in SCI research that are important from the consumer perspective.

    https://www.surveymonkey.com/r/SCI2020

  7. #17
    I have just sent the following email to dr. Lyn Jakeman, director of the division of neuroscienze at “The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH)”

    lyn.jakeman@nih.gov




    Dear Dr. Jakeman,

    my name is Paolo Cipolla, I am paraplegic since 2004 due to traumatic spinal cord injury.
    I am writing to you about the upcoming meeting “SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research.”
    https://meetings.ninds.nih.gov/Home/Agenda/21041


    I have seen on social media an open letter written by Corinne Jeanmaire (attached below) and I would like to let you know that I fully agree with the considerations explained in the letter.

    Personally I have the impression that in the past there was a much stronger effort to find a cure for people living with spinal cord injury than I can see today where it seems that research has shifted more toward compensative strategies such as brain computer interface etc.

    You may remember the Christopher Reeve Superbowl commercial (Jan 2000)
    https://youtu.be/c1zE5f_A5sY


    It seems to me that so many years later the agenda of the NIH meeting should be mostly about how to finally find a cure for people living with spinal cord injury i.e. CHRONIC SCI, while I see the agenda is mostly focusing on potential therapies that may work just for acute SCI.

    I know that doing lab research on chronic SCI is a bit more complicated than acute, but then when it is time to move to clinical trials in acute SCI there are so many obstacles that is much more likely the potential therapy will “crush” in the “valley of death” than it is with a chronic SCI clinical trial.

    Here is a 2017 study that gives an idea of how difficult can be to do clinical trials on acute SCI:
    https://www.ncbi.nlm.nih.gov/m/pubmed/27627704/


    Why all this focus on acute SCI?
    Is the scar tissue really an impossible barrier to deal with so that there is hope for effective therapies just for acute SCI?


    Finally, over the years, many researchers have explained to me that to restore most neurological functions in people with SCI it is necessary to regenerate the nerve fibers in the chronically damaged spinal cord while therapies that only induce plasticity together with the best possible rehab approach may restore only limited functions in a very small part of the whole patient population.
    Therefore it seems to me that common sense would suggest that, as a strategic way forward, the main focus of SCI research for the future should be to find therapies that can regenerate nerve fibers in the chronically injured spinal cord (also keeping in mind the much easier path to complete clinical trials in chronic SCI).


    Given all the above considerations I wonder if it would be possible to adjust the agenda of the meeting to include more regenerative research applicable at the chronic stage of SCI also inviting researchers that are willing to work in this direction so that they can hopefully launch a powerful effort to find a biological cure for chronic SCI.

    Unfortunately it is unlikely that I will be able to attend the meeting, but I intend to follow the meeting in live streaming and provide more inputs in the future.

    I will share this email on social media and public forums.

    Thank you for you king attention.

    Kind regards,

    Paolo Cipolla - Chronic spinal cord injury must become curable!







    Open letter written by Corinne Jeanmaire – December 4th, 2018

    https://endparalysis.org/nih-disruption-in-cure-spinal-cord-injury-research/


    NIH Disruption in cure spinal cord injury

    Subject: Launching a Decade for Disruption in Spinal Cord Injury Research

    NIH Disruption in cure spinal cord injury
    Dear Dr. Jakeman,

    I am extremely happy to learn of the NIH initiative to organize a meeting entitled “SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research.”

    As a paraplegic (since 2001), I am actively involved in various international projects to promote research into SCI recovery. Although I truly welcome the recognition for the need for Disruption, after reading the draft agenda, substantial doubts have plagued me.

    ACUTE injuries first on the Agenda? For us and with us?
    On the research agenda, the first day is solely dedicated to Acute and Sub-acute spinal cord injury. Even though the day includes a session whereby the SCI community will express their priorities, my opinion is that the prominent place given to Acute Research already sends a message. It neglects the fact that:


    – All 2.5–3 million people affected by SCI worldwide are actually chronic. Unlike the complex and small Acute SCI population, Chronic SCI represents the only potentially attractive market for the Biotech Industry, as well as a multi-billion USD Healthcare/Welfare public saving opportunity

    NIH Disruption in cure spinal cord injury

    – Research on Acute Injury is less likely to lead to conclusive clinical trials and thus to actual therapies coming to market. As shown in a 2012 study, both high spontaneous recovery rate and complexity of enrolling patients after just hours after injury makes it scientifically very difficult (and quite questionable ethically!) to test a therapy at that early stage.



    CHRONIC SCI – E-stim and robotics: is this the best we can do?
    The second-day Agenda implies that the 10-year-Disruption prospects for Chronic SCI are limited to, respectively, compensatory measures potentially improving quality of life and small functional improvement for a very small number of patients through robotics and E-stim.



    Admittedly, E-stim has recently shown to enable a limited but so far unseen level of functional improvement for very few patients with incomplete injuries. For complete injuries, it has sometimes led to tiny but unexpected results.

    Any progress is progress, but is this the breakthrough we are waiting for? Do we want to settle for that? Clearly, e-stim alone will never give the patients the kind of recovery they need, even though it will probably be part of the puzzle.

    NIH Disruption in cure spinal cord injury
    What about… Disruption into recovery rather than just continuing to make our paralysis more bearable?
    We know that recovery from a Chronic SCI is likely to come in various gradual steps and will require combinations of various approaches. Surely then there is a need to seek answers/solutions for actual regeneration and/or bridging the chronically-lesioned cord?

    Would it not be feasible and productive to discuss the facilitation of an environment; an eco-system and/or the setup of a flexible roadmap that will ease the development and testing of cutting-edge combination therapies (E-stim will probably be one of them) to gradually or partially bringing back various core functions to SCI patients?

    NIH Disruption in cure spinal cord injury
    I do not presume to have the answers; only these questions which are intended to be as constructive as possible.

    As a European Citizen, I do welcome the tremendous role and support from the NIH with respect to SCI research. Spinal Cord Injury is a global condition and since the Draft Agenda is openly available on the internet, I have taken the liberty to raise these questions, and, hopefully, open the path to constructive discussion(s).



    Thanking you for your attention and looking forward to your feedback.





    With best regards.



    Corinne Jeanmaire – SCI T10 since 2001

    Inviato da iPhone
    Last edited by paolocipolla; Yesterday at 09:04 PM.
    In God we trust; all others bring data. - Edwards Deming

  8. #18
    Quote Originally Posted by Skipow View Post
    Here is your chance to express your opinion and voice for the consumer panel. The North American Spinal Cord Injury Research Consortium (NASCIC) is looking to gather information from the community on issues in SCI research that are important from the consumer perspective.

    https://www.surveymonkey.com/r/SCI2020
    In my opinion it is a confusing survey. For sure it didn’t allow me to express my perspective on SCI research, therefore I decided to write my personal email.

    Hope many people will send their own email or simply express support to Corinne’s email.

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

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