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Notice of Intent for NIH initiatives re data coordination and research collaboration centers

Discussion in 'Latest ME/CFS Research' started by medfeb, Oct 21, 2016.

  1. medfeb

    medfeb Senior Member

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    NIH has published a notice of intent for the data management and coordination center and for the research collaboration centers. The Notices are being provided to allow potential applicants sufficient time to develop meaningful collaborations and responsive projects.

    These are not the funding announcements themselves but give useful information on the plans

    NOT-NS-17-003: Notice of Intent to Publish a Funding Opportunity Announcement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) (U54)
    NIH Funding Opportunities and Notices in the NIH Guide for Grants and Contracts:

    NOT-NS-17-004: Notice of Intent to Publish a Funding Opportunity Announcement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Data Management and Coordinating Center (DMCC) (U01) NIH Funding Opportunities and Notices in the NIH Guide for Grants and Contracts:
     
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  2. Denise

    Denise Senior Member

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    I see that both notices use the phrase:
    "Foreign components are allowed, but applications from foreign institutions will not be accepted."
     
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  3. aaron_c

    aaron_c Senior Member

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    Is it normal to have a separate release date and publication date for the announcement? It seems redundant.

    I wonder in part because yesterday I got the email from MEAction saying that it has been a year since Dr. Collins promised change and we don't have any RFA's for ME/CFS. I was quite discouraged, and I emailed the NHS to say so...perhaps others did so as well, and that is why they sent this out today? Or maybe they were always going to be mindful of the one-year mark and they just counted the year differently?

    Does anyone know when dollar amounts get announced? In other words: Do we know that this is a significant step, or could they end up deciding that nothing they get is good enough because it lacks a specific theory et?
     
  4. BurnA

    BurnA Senior Member

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    If only emails had such a powerful and immediate impact.
    I'd say this has been in the making for quite some time.
     
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  5. aaron_c

    aaron_c Senior Member

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    I agree they obviously didn't write this whole thing up (and get approvals, et et) overnight. I was only imagining that the whole thing was ready and waiting for the planned December announcement when they were alerted to their prior timeline and someone higher up decided "hey, it can't hurt to let them know what's coming."

    Still, you are probably right in that even this would be a pretty nimble response for something like the NHS.

    Do you have any perspective on how good this news is?
     
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  6. BurnA

    BurnA Senior Member

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    I imagine it's very good news but I am not familiar with the process, it seems like it's one more step along the road to having these research and data centres becoming a reality.
     
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  7. medfeb

    medfeb Senior Member

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    NIH fairness rules dictate a certain process for how announcements like these funding announcements are made so nobody has an unfair advantage. I understand that they are using the Notice of intent as a mechanism to provide information about the plans in these two areas sooner than the expected December issue date

    The big question is obviously how much money they will commit to these efforts.
     
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  8. aimossy

    aimossy Senior Member

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    I'm finding it interesting that language is vague as you would expect in order to not make promises, but seems to be suggestive that actual research these collaborative research centers could do might receive funding? Yes exactly - big question how much!

    "The overarching goal of this initiative will be to establish a network of Centers that will work independently and collaboratively to define the causes of and discover improved treatments for ME/CFS. The purpose of the ME/CFS CRC research program is to facilitate research in ME/CFS through support of 1) collaborative basic and clinical research on ME/CFS, including longitudinal studies of individuals with ME/CFS within each ME/CFS CRC and across CRCs within the network; 2) foster early stage basic and clinical investigators in ME/CFS research; and 3) provide access to information related to ME/CFS for basic and clinical researchers, academic and practicing physicians, healthcare professionals, individuals with ME/CFS, and the lay public."

    "The FOA for the ME/CFS CRCs will utilize the U54 activity code for cooperative agreements, which will allow substantial NIH involvement with the awardees. The FOA is expected to be published in December 2016 with an expected application due date in April 2017. The NIH anticipates holding a pre-application web-based teleconference to which all interested prospective applicants are invited."

    Still some time away..

    "This Notice encourages investigators with expertise and insights into this area of ME/CFS to begin to consider applying for this new FOA.

    The intended FOA will solicit applications that propose research on ME/CFS. This initiative will support multidisciplinary, collaborative research teams to investigate the underlying basic mechanisms that cause ME/CFS and to work toward the development of new treatments for ME/CFS. It is encouraged, but not required, for investigators to partner with the Clinical and Translational Science Award (CTSA) investigators at their institution(s). Each Center will also be expected to collaborate with other funded Centers, and coordinate their research and data collection and management with the Data Management and Coordinating Center.

    Applicants are encouraged, but not required to use a multiple program director/principal investigator (PD/PI) mechanism to facilitate collaborations between clinicians and basic scientists. Multidisciplinary teams and diverse areas of expertise may be represented and may be located at different institutions. Foreign components are allowed, but applications from foreign institutions will not be allowed under this FOA."

    I wonder what this means - hoops to jump through?

    "It is encouraged, but not required, for investigators to partner with the Clinical and Translational Science Award (CTSA) investigators at their institution(s)."
     
  9. viggster

    viggster Senior Member

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    The CTSA program started about 7 years ago to fill the gap between basic discovery (lab work) and clinical trials. NIH has traditionally funded the early research, and pharma developed drugs. But there has been a huge gap in between those two poles - it's often called the "valley of death" because it used to be so hard to get funding for the in-between, or "translational" research. So NIH pumped a bunch of money into developing infrastructure to help fill the gap. Here's a two-page fact sheet if you want to learn more about it:
    https://ncats.nih.gov/files/CTSA-factsheet.pdf

    The ME/CFS announcement is encouraging researchers to use all of this infrastructure that's already been put in place to help speed lab discoveries into clinical trials.
     
    Last edited: Oct 22, 2016
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  10. Anika

    Anika Senior Member

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    Does this announcement help clear the path for some discussion by Vicky Whittemore next week at the IACFSME conference? I expect there has been an effort to get something out ahead of that to help foster further awareness there.
     
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  11. aimossy

    aimossy Senior Member

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    Thanks heaps @viggster that's really helpful and interesting detail.
    I'm definitely feeling encouraged by the language in this FOA.
     
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