The changes we’ve made over the past three years have transformed our organization and our approach to CFS research. The traditional model, marked by passive support of research grants, is appropriate for disease states for which there exist large government- and industry-supported research portfolios that can be augmented through private philanthropy. As you know, this is not the case for CFS.
To inform our transition beyond the traditional role, we have learned from other organizations that leverage their investment in research to get more from academia, government and industry. We have benefited tremendously from innovative research programs developed by the Myelin Repair Foundation (working on myelin repair therapies for M.S.), the Michael J. Fox Foundation (working for better therapies and a cure for Parkinson’s disease), the Susan B. Love Army of Women (giving all women the opportunity to partner with researchers and take breast cancer beyond a cure), FasterCures (an “action tank” that works to improve the medical research system) and others. (Note: you can click on the images at right to see an enlarged version.)
Now, we look to the future and the opportunity to build on our dynamic program in four major areas by:
● Funding six to eight new grants from our 2011 Request for Applications;
● Building a larger, more valuable SolveCFS BioBank;
● Developing a biomarker “hit list” to drive future research priorities; and
● Expanding collaborations and networks of investigators working in the field.
In April, we widely circulated a new Request for Applications that generated 36 letters of intent. Twenty-seven of the projects described were responsive to our emphasis on advancing objective diagnosis and effective treatment. Full proposals were invited from those investigators and were due on Sept. 30, 2011. All applicants (and their institutions) have agreed to revised policies that strengthen the Association’s data-sharing and intellectual property policies. Proposals will be reviewed on two levels: 10 measures of scientific merit by peers in related disciplines, and nine measures of strategic merit judged by reviewers familiar with the CFS literature and the field. The number of new projects awarded funding will depend on the rigor of applications submitted and the amount of funds available through The Catalyst Fund. Read more about the Fund and some of our Catalysts at http://bit.ly/vZMnrJ.
More Valuable BioBank:
In March 2010, we announced the launch of the SolveCFS BioBank, the first combined patient registry and biorepository of its kind. In its first 18 months of operation, the BioBank has enrolled 449 participants (including well-characterized CFS patients and healthy controls) and we have completed our first collaborative study. Results from that study are being analyzed and prepared for publication. We are now ready to expand the BioBank and can engage participants anywhere in the world, matching subjects and samples to the needs of individual investigators. BioBank participants contribute to multiple studies and form the basis of study by various investigators focusing on different aspects of CFS, creating a “virtual center” in which we are partners in the design and conduct of research studies. Through the BioBank, we can deepen understanding of results obtained for individuals, subgroups and the population as a whole. It also helps provide continuity as individual investigators enter and exit the field.
Biomarker Hit List:
One of the products of the projects funded in 2009–2010 is the knowledgebase generated from 250,000 articles about CFS and related areas of science (see http://bit.ly/vbG1K2). Dr. Bud Mishra’s team at New York University built this knowledgebase and the text mining tools that will enable us to use these assets to build a data-driven target list of biomarkers. We will then “shop” this list with academic centers and biotech companies to stimulate validation of these target biomarkers using samples from the BioBank or other clinical populations, accelerating the pace of moving from theoretical to practical applications for diagnostics and treatments.
In 2009 we networked our funded investigators, bringing them together to discuss their study designs, data collection and subject recruitment — before their studies got started. The network was expanded to include NIH-funded investigators and has yielded new collaborations and greater sharing of resources, data and ideas. We are now working with NIH and several academic groups to establish a secure data-sharing platform and to standardize ways of defining cases and collecting and analyzing data to improve comparability of research across all settings and to provide a more formal infrastructure for collaboration and networking. The working name for this project is “CASA” — for Collection, Aggregation, Storage and Analysis. Dr. Dennis Mangan, formerly of the National Institutes of Health, presented ideas for this platform at the IACFS/ME conference. (See The CASA Project – Sept 2011.)
These new initiatives will truly transform the way that CFS research is conducted — not just for studies conducted with Association support, but for the field as a whole. This approach reflects an integrated strategy to overcome the barriers of the past and accelerate the pace of discovery and implementation for the future. We hope you’ll take part in this transformation by becoming a Catalyst through a donation to The Catalyst Fund. Thanks to a challenge grant issued by the McGrath Family Foundation, for a limited time, donations made online will be tripled.
Thank you for your interest and for your support!December 1, 2011