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Home > In the News > 2012 > February > Research Institute Without Walls

Research Institute Without Walls

Sunday 26 February 2012

From the CFIDS Association of America:

Press Release Announcing the Association's Research Institute Without Walls

23. FEB, 2012 BY BOARD OF DIRECTORS

The CFIDS Association of America Breaks Ground On Its “Institute Without Walls”
To Transform CFS Research

Association-funded research will form a pipeline to effective treatment for CFS

CHARLOTTE, N.C. – February 23, 2012. The CFIDS Association of America today announces new additions to its comprehensive research initiative to advance objective diagnosis and effective treatment of chronic fatigue syndrome (CFS): five new grant awards, two new projects using resources from a central biobank and curation of a biomarker “hit list” to guide future research. The new investments total $2 million.

“Our ‘research institute without walls’ vision becomes a reality today with the tightly integrated projects led by experts in diverse disciplines,” says CEO Kimberly McCleary. “Rather than expending precious funds – and time – to construct a bricks-and-mortar facility, we have attracted top institutions to put their best minds to work immediately. We function as director and connector, networking carefully selected projects, guiding progress and closely monitoring performance at every step.”

“We’re building a pipeline to effective treatment that includes objective means to diagnose and subtype CFS,” says Suzanne D. Vernon, Ph.D., the Association’s scientific director. “These eight projects extendan initiative begun in 2008 to overcome the ‘one and done’ type studies that have stymied progress in patient care.” Vernon, a microbiologist with more than 15 years of experience in CFS research, directs the Association’s research program.

Five new grants build on past discoveries and explore new scientific terrain:

• Dane Cook, Ph.D., of the University of Wisconsin-Madison has teamed with Alan Light of the University of Utah and Gordon Broderick of the University of Alberta to link information gathered from exercise testing, brain imaging and gene expression markers in the blood to understand post-exertional relapse, a hallmark feature of CFS. This project will attempt to validate blood and brain markers independently identified by these investigators in earlier studies.
• Spyros Deftereos, MD, of Biovista in Charlottesville, Va., will use a proprietary, very large-scale drug repurposing platform called the Clinical Outcome Search Space™ (COSS) to analyze the biomedical literature, patents, adverse event databases and other information sources to systematically identify non-obvious new drug candidates to treat CFS.
• Patrick McGowan, Ph.D., of the University of Toronto Scarborough will build on evidence of environmental influences that affect the function of the immune system in CFS patients. Using samples collected through the SolveCFS BioBank, McGowan will look for genome-wide epigenetic changes and assess whether these alter the immune response. This study may uncover novel diagnostic and therapeutic biomarkers.
• Marvin S. Medow, Ph.D., New York Medical College in Valhalla, N.Y., will extend earlier work supported by the Association that shows orthostatic challenge, such as prolonged upright posture, leads to problems with memory, concentration and information processing in CFS patients. After measuring brain blood flow during a head upright tilt test while testing cognitive ability, he will test three interventions to identify mechanisms to improve neurocognitive impairment.
• Peter Rowe, M.D., of Johns Hopkins Children's Center in Baltimore, Md., has observed that simple movements like a straight leg lift can trigger fatigue and brain fog in CFS patients. Dr. Rowe's group hypothesizes that the underlying mechanism is similar to fibromyalgia pain, where nerves become extra sensitive to stimulation, a process known as central sensitization. His work will be among the first to explore the possible link between fatigue, cognition and central sensitization. The results are expected to identify a subset of patients who will benefit from a different therapeutic approach.

In addition to these grants, the Association announces two new collaborations through its SolveCFS BioBank, an integrated patient registry and biorepository that houses extensive standardized medical information and biological samples from individuals diagnosed with CFS and healthy controls:

• Eric Delwart, Ph.D., at the Blood Systems Research Institute, San Francisco, Calif., will use laboratory techniques known as metagenomics to screen blood samples for known and novel infectious agents.
• Dr. Leonard Jason, Ph.D., of DePaul University in Chicago, Ill., is using symptom information reported by SolveCFS BioBank participants to assess various case definitions used to classify CFS patients.

The Association will also work in partnership with start-up venture LogosOmix to develop a "biomarker hit list" for CFS based on the product of a 2009 – 2010 grant to New York University that created a knowledgebase of the CFS literature and text-mining tools.

"These strategically aligned projects transform how research by patient-supported organizations is done. No longer are we simply passive sponsors, we are true partners," states Vernon.

In 2011, the Association established The Catalyst Fund to attract support for its research program. "In science, 'positive' catalysts speed a particular reaction. We're deeply grateful to more than 2,000 individuals, foundations and companies who became catalysts through donations both large and small," says McCleary. She and Vernon will outline the "research institute without walls" strategy, describe the projects and announce a $250,000 gift from best-selling author Laura Hillenbrand at an invitation-only Catalyst Fund event this evening in Charlotte.

The above, with comments, originally appeared here.

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