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Thread: NIH Conference on SCI Research

  1. #41
    Quote Originally Posted by GRAMMY View Post
    ...
    Thanks Grammy, I'll keenly read if you get around to it.

  2. #42
    ...
    Quote Originally Posted by Skipow View Post
    I thought this was interesting at the end and how the author made a lot of comments on the translation and implementation.

    "If the SCI patient community wants to use its frustration to accelerate the development of specific therapies, it may want to look at an aggressive top-down approach using a contract research organization model and have all studies done in parallel from the beginning to end robust therapies. Angel investors or foundations in it for the long haul will be needed. Alternatively, the National Center for Advancing Translational Sciences (NCATS) model of funding translational research might work, but rock solid therapeutic targets will be required. This strategy could lead to "disruptions" that could dramatically accelerate the pace of development of novel therapeutics."

    The author made them for good reason. Here are some basic core issues that cannot be overlooked. The NIH was created to safeguard the health of the country rather than to be an agency picking winners and losers. Somewhere along the way, it went astray. A realignment of core values going from projects back to people would hasten results. "Disruption" has to start with the NIH. et al. 2011 Nature: Few isolated research efforts have an immediate, substantial and durable impact; successful translation of basic research to practical applications occurs sparingly and with the average delays of almost three decades. The aim of science is to expand our knowledge base, which eventually yields useful applications. This is what scientists entered their profession to do.

    When the planning of this meeting occurred, it was intentionally planned to focus on the research phase, as it was an NIH conference, not an FDA or CMS directed Conference.

    That's the problem where disappointment and misplaced expectations for the coming decade(s) started for many. The silos were built in from the beginning if the seats were not filled with the necessary key players that have been mentioned previously. Strategic partners were not present.

    To be fair with the Lemmon summary, the description and abstract of the meeting read...

    SCI 2020: Planning for a Decade for Disruption in Spinal Cord Injury Research will bring together experts in the field of spinal cord injury research to debate the state of science and opportunities for moving forward in the next decade, in a panel and audience participation focused format. The objectives are:

    1) To provide a critical multidisciplinary assessment of recent progress and gaps in SCI research across the basic, translational and clinical spectrum

    2) To identify the key questions and top priorities to move the SCI field forward in the coming decade and

    3) To disrupt existing silos and create multidisciplinary collaborations that will address the defined priorities for the short and long term.


    Yes, more needs to be done to focus on improving the clinical translation and implementation of research and treatments for our community. I think it will require surveys from the community to understand what the threashold of acceptable efficacy is for different types of interventions.

    Your thought might be right, as that part of the agenda never saw the light of day.

    Lemmon: "But mismatches between research system realities (“where is the innovation”, grant duration versus the time it takes to do meaningful chronic studies in animals and people, etc.), clinical trial funding mechanisms, FDA approval processes, and patient needs and expectations will require dramatic changes in strategies and tactics. Those were not addressed at this meeting".
    If people want cures or therapies to come out of all this research your tax dollars support at the NIH, the wheels need put into motion to change or the same path will be followed. I guess there is a difference in what people thought "disruption" was going to be. I harbor no ill will against those that got up and left the meeting that Vance was observing or the ones at home that disconnected their computers.
    I kinda follow spinal cord injury research and NIH grants a tad bit over the years and I felt pretty time warped (circa 2000) with what I saw. The hours of "paralysissplaining" stuff should have been eliminated for more constructive time spent on important issues not even touched.
    Not that I honestly expect much change, but Good Golly Miss Molly this is 2019. "Disruption" was a heavy duty mislabel on what was scheduled and the agenda that actually happened.
    Last edited by GRAMMY; 05-17-2019 at 02:52 PM.

  3. #43
    Quote Originally Posted by niallel View Post
    Thanks Grammy, I'll keenly read if you get around to it.
    I will ripen it to a stage of utmost tact and diplomacy.

  4. #44
    Details of NASCIC's session are in the link below:

    https://nasciconsortium.org/wp-conte...lts-NASCIC.pdf

  5. #45

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