On February 23, 2012, the CFIDS Association of America announced the new “Research Institute Without Walls” or RIWW. Don’t think of this institute as a physical, bricks-and-mortar facility. Instead, the RIWW is a collection of tightly integrated, expert-led research projects—all pointed to one goal: To advance objective diagnosis and effective treatment of CFS.
With the RIWW, the Association breaks out of the conventional non-profit role of simply sponsoring medical research and becomes a full partner with leading research institutions. With the RIWW, the Association and the individuals who fuel it are at the core of the research. “People with CFS lose so much,” says Association Scientific Director Suzanne Vernon, Ph.D. “With the RIWW, we’re taking a very people-centric approach. In the process, we’re giving people with CFS back a stake in the future—and a role in the research that, ultimately, will impact their daily lives.” What’s more, every step of the way, the Association will be directing, networking and closely monitoring performance. We’ve already convened the investigators to collaboratively optimize the projects individually and collectively.
Features of the Research Institute Without Walls
SolveCFS BioBank | At the core of the RIWW’s participant-centric approach is the SolveCFS BioBank. It’s a patient registry and bio-repository. Through it, the Association enrolls people with CFS and healthy participants to be active research stakeholders,
collecting standardized clinical data and biological samples for use by approved researchers.
Sponsored Research | This component of the RIWW refers to five new projects that will be supported by Association grants. Each project was competitively selected for its potential to build on past discoveries and explore new scientific terrain. Each day this week we will focus on one of these five projects, adding links here to the descriptions of these projects.
- Marvin S. Medow, Ph.D., of New York Medical College in Valhalla, N.Y., is extending earlier Association-supported work in which he connected orthostatic challenge (e.g., prolonged upright posture), with problems with memory, concentration and information processing in CFS patients. Now, after measuring patients’ brain blood flow during a head upright tilt test, he will test three interventions to identify mechanisms to improve “brain fog” that impairs many patients’ daily lives. Link to more information about Dr. Medow’s study: http://www.research1st.com/2012/06/11/medow-riww/
- Building on evidence of environmental influences that affect the function of patients’ immune systems, Patrick McGowan, Ph.D., of the University of Toronto, is using blood samples from the SolveCFS BioBank to help identify novel diagnostic and therapeutic biomarkers. He will be the first to apply the “hot” new field of epigenetics to the study of CFS. More information about Dr. McGowan’s research: http://www.research1st.com/2012/06/12/mcgowan-riww/
- Peter Rowe, M.D., of Johns Hopkins University in Baltimore, Md., is exploring possible links between two CFS symptoms—fatigue and brain fog—and central sensitization. Central sensitization refers to a process in which the nerves of the body and brain become very sensitive to stimulation. This work has the potential to use neuromuscular strain as a clinical biomarker and to identify a new approach to therapy for at least a subset of patients. More information about Dr. Rowe’s research: http://www.research1st.com/2012/06/13/rowe-riww/
- Dane Cook, Ph.D., of the University of Wisconsin-Madison is teaming up with Alan Light, Ph.D., of the University of Utah and Gordon Broderick, Ph.D., of the University of Alberta in a first-ever study that will examine post-exertional relapse and interactions between the brain and the immune system in this cardinal feature of CFS. More information about Dr. Cook’s research: http://www.research1st.com/2012/06/14/riww-cook/.
- Drugs developed for one purpose often have applications in other conditions that, at fi rst, seem novel and unexpected. That kind of surprise is what Spyros Deftereos, M.D., of Biovista in Charlottesville, Va., will try to strategically discover. Using Biovista’s proprietary technology, Deftereos’ team is analyzing the biomedical literature, patents, adverse event databases
and other information sources to systematically identify new candidates to treat CFS using medications already FDA-approved for other uses. More information about Dr. Deftereos’ research: http://www.research1st.com/2012/06/15/riww-deftereos/.
Collaborative Projects | Two more teams of researchers are accessing the SolveCFS BioBank’s resources to: (1) screen blood samples for known and novel infectious agents, and (2) review participant-reported symptom information to assess various case definitions used to classify CFS patients. We are actively seeking new collaborations to put even more of the BioBank’s resources to immediate benefit.
Data-Sharing Platform | Researchers linked through the RIWW are required to submit their data to a secure data-sharing platform. The Association has established a collaboration with Vanderbilt University and its Research Electronic Data Capture , or REDCap, system to host common data gathering tools and the data sets generated by Association-funded researchers and the SolveCFS BioBank. This will make data easier to compare and search, yielding important new insights.
Biomarker “Hit List” | The Association is partnering with a start-up venture to develop a biomarker “hit list” using a knowledgebase of the CFS scientific literature and text-mining tools that will help guide future research. A biomarker is an indicator of a biologic state used to objectively measure processes in the body that occur during health, disease or in response to treatment.
How You Can Help
The Research Institute Without Walls relies on the CFS community to be fully engaged in the search for answers that will truly impact individual lives and futures. You can help by contributing to the Catalyst Fund, participating in the SolveCFS BioBank and helping us spread the word about this revolutionary approach to research. You can make a gift anytime day or night using our secure online donations page: http://bit.ly/RIWW-fund
To stay informed as these projects move forward, please be sure to sign up for our free monthly e-newsletter, Research1st News at http://bit.ly/R1st-signup. By sharing your email address with us, you will receive timely progress reports, as well as invitations to webinars and in-person briefings. Catalyst Fund donors receive special updates from Association leaders and RIWW faculty.