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