March 29, 2010
Web version of this announcement:
http://capwiz.com/cfids/utr/1/BXMCMHIUDH/DSIQMHKHQO/4937930911 (includes links to other materials)
Announcing the SolveCFS BioBank!
When the CFIDS Association launched its expanded research initiative in
mid-2007, we heard loudly and clearly from the CFS community that
research was its top priority. In response, we:
- recruited a full-time scientific director;
- issued a Request for Applications focused on biomarkers and methods
for early detection, objective diagnosis and effective treatment of
- adopted updated funding policies;
- strengthened our peer review system;
- awarded six innovative grants;
- established the first funded network of linked investigators;
- convened an intensive three-day meeting of experts;
- conducted site visits of funded projects; and
- kept the community informed about our progress using a host of print
and electronic publications, recently expanded to include regular
When scientific director Suzanne D. Vernon, PhD, joined our staff in
late 2007, one of her goals was to fill scientific
"infrastructure" gaps she believed were barriers to
attracting new investigators and validating some of the known
biological markers published by research groups in the U.S. and other
countries. Linking bench researchers to well-defined clinical
populations was one of the foremost challenges.
In September 2009, Suzanne completed her certificate in public health
genomics at Sarah Lawrence College and she met leaders from Genetic
Alliance (GA), a network of more than 1,000 disease-specific advocacy
organizations committed to transforming health through genetics.
Suzanne discovered how GA had created a centralized registry and
repository to enable translational research for a host of underfunded
and rare conditions, addressing the cohort access issue.
Genetic Alliance president Sharon Terry recounts her goal in
establishing the GA BioBank with other leaders in disease research
advocacy: "The Genetic Alliance BioBank was built with
organizations like the CFIDS Association in mind -- to provide them
with the infrastructure to pursue sophisticated, novel research
collaborations with academia and industry to develop new diagnostics
and therapeutics to better understand and treat disease."
Suzanne conducted her own careful research, comparing the Genetic
Alliance model to several others, weighing the costs and benefits to
the organization, the patient community and researchers in academia and
industry. Summarizing her findings, she told our board of directors
last fall, "The Genetic Alliance uses a cooperative, cost-sharing
model that translates into a tightly controlled, comprehensive
infrastructure for biobanking. Organizations that start from scratch
often spend millions of dollars just to put the systems and
documentation in place before a single sample is collected."
Genetic Alliance set high standards for participant involvement in
research, exceeding requirements of all applicable federal, state and
local laws, rules and regulations. The GA BioBank earned a Certificate
of Confidentiality from the National Institutes of Health. The GA's
board of directors oversees the fiscal management and annual audit. It
provides standardized protocols and allows for ethical re-contact and
robust privacy and security protections. Our legal counsel agreed with
In December, the Association's board of directors approved plans to
join the Genetic Alliance BioBank and to apply for approval from GA's
Internal Review Board (IRB) for the SolveCFS BioBank. Chairman of the
board Adam Lesser recalls the discussion about initiating a biobank.
"It was the next logical step to advance research in CFS, and
Genetic Alliance offered tremendous capacity to augment our research
program." Final approvals were granted by the IRB earlier this
On behalf of the board of directors and staff of the CFIDS Association
of America, I am delighted to introduce the SolveCFS BioBank. The
SolveCFS BioBank will collect and store a bank of biological samples
(such as blood, tissue, cells and DNA) and clinical information at the
GA BioBank laboratory facility from individuals with CFS and healthy
individuals (controls) aged 10 and older from the U.S. and other
countries. It ensures that individual privacy and confidentiality are
protected and that samples are available to researchers whose research
projects have been reviewed and approved by the CFIDS Association of
America Medical Research Advisory Committee.
Through the SolveCFS BioBank, individuals can enroll once and will then
contribute information to multiple projects, advancing our
understanding of CFS on multiple fronts. Because the SolveCFS BioBank's
purpose is dedicated to research and in order to preserve the privacy
and security of all participants' information, participants do not
receive personal results about any tests performed using their samples.
The Association will provide regular updates about how SolveCFS BioBank
samples are being used, as well as the results of research conducted.
Researchers will be required to publish their results in peer-reviewed
Since securing approval for the SolveCFS BioBank, the Association has
established its first study collaboration. We are working with several
clinical and academic collaborators and major industry partners. As
such, enrollment criteria for the inaugural study will be rather
strict. As Suzanne indicates, "The SolveCFS BioBank is an
innovative research resource that will be used for validation of
promising biomarkers, genetic studies, family studies and genomics
research. It will be a resource for discovery, diagnostics and targeted
treatments. We hope to have adequate funding soon to expand recruitment
beyond the inaugural study requirements. This will truly empower more
people affected by CFS to participate in this exciting research, and
will ultimately lead to the answers we all seek."
We have recently updated our www.SolveCFS.org website to house
extensive information about the SolveCFS BioBank. We look forward to
sharing additional updates, news about expanded recruitment and, best
of all, results from research that utilizes the SolveCFS BioBank.
We are grateful to Association supporters for making this new
initiative possible. It is just one of many reasons that 2010 promises
to be a year of important advances in making CFS widely understood,
diagnosable, curable and preventable.
K. Kimberly McCleary
President & CEO
The CFIDS Association of America
P.S. Please continue (or begin!) your support of these and other
important Association efforts by making a tax-deductible gift today
using our secure website at