RFA Ticker, 6/6/16


There is an interesting case study among last week’s RFAs. The National Institute of Alcohol Abuse and Alcoholism, along with two other Institutes, issued three RFAs with funding to continue the National Consortium on Alcohol and Neurodevelopment in Adolescence. This caught my eye, given the concept clearance for an ME/CFS consortium.

The National Consortium on Alcohol and Neurodevelopment in Adolescence (NCANDA) has five academic sites and a central data analysis resource. Each site recruits adolescents and collects a standard battery of imaging, cognitive testing, etc. These data are deposited in the central data resource. Each site also collects longitudinal data on the subjects, and runs a research project of its own.

This sounds a lot like the research side of the Centers of Excellence recently recommended by the CFS Advisory Committee. It also sounds a lot like the concept presented by Dr. Vicky Whittemore to the Council of the National Institute of Neurological Diseases and Stroke on May 26th. Dr. Whittemore described “a consortium with multiple sites utilizing common protocols across the clinical projects who can also then develop studies across the sites that would address etiology, potentially imaging, potentially biomarkers studies, genetics, that would all work together.”

Here’s the thing: the three RFAs issued by NIH for NCANDA total $5 million for 2017. That’s it. Five million dollars, and that does not provide funding for actual research projects beyond the characterization of the cohort.

On the one hand, if our RFA following the concept clearance is for $5 million in one year, that’s still $5 million more than we had before. And establishing a consortium for ME/CFS research is an essential step. But on the other hand, NCANDA has a total cohort of only 850 patients. Five million dollars actually does not buy a whole lot, either in the cohort size or support of research.

Don’t get me wrong. I am enthusiastic about the possibility of funding for an ME/CFS consortium. But it’s important to look at other examples in order to gauge our own prospects. Five million dollars to establish an ME/CFS consortium at multiple academic sites plus a central data core would be good news. But it is not sufficient. Not even close.

  • Total RFAs Issued by NIH: 235 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,081,140,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
5/30/16 4 $6,900,000 Zero
5/23/16 8 $37,400,000 Zero
5/16/16 2 $7,800,000 Zero
5/9/16 11 $32,100,000 Zero
5/2/16 8 $32,485,000 Zero
4/25/16 4 $7,500,000 Zero
4/18/16 10 $42,230,000 Zero
4/18/16 10 $42,230,000 Zero
4/11/16 4 $6,825,000 Zero
4/4/16 8 $27,000,000 Zero
3/28/16 13 $161,000,000 Zero
3/21/16 1 $2,700,000 Zero
3/14/16 5 $23,650,000 Zero
3/7/16 9 $82,710,000 Zero
2/29/16 1 $1,890,000 Zero
2/22/16 9 $30,100,000 Zero
2/15/16 4 $26,500,000 Zero
2/8/16 5 $9,500,000 Zero
2/1/16 8 $26,000,000 Zero
1/25/16 4 $9,300,000 Zero
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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3 Responses to RFA Ticker, 6/6/16

  1. Denise says:

    Thank you very much for looking into the NCANDA consortium.
    I sincerely hope that NIH is not considering such paltry funding for the proposed ME consortium.
    Time will tell I guess…

    (It’s difficult to be patient.)

  2. I like the way you think.

    It should be noted, however, that alcoholism in adolescents may be a huge problem in numbers, and find it easier getting funds. It is hoped timely intervention may help with the future of individuals who would otherwise be burdens to themselves and society.

    We can argue the same – taking ME/CFS patients back into contributing to society and off the disability rolls will make a huge difference – but our numbers may be smaller, and it is going to be too late for those of us whose systems have been ravaged to the point of not being fixable.

    Do you have any idea of the size of the alcoholic adolescent cohort? And, of course, there are probably many other research initiatives being done on that cohort already – they have not been ignored all along, as we have.

  3. Susan says:

    See above: “NCANDA has a total cohort of only 850 patients.”

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