NOTICE OF PUBLIC MEETING AT CDC

[Guest guest]

 

NOTICE OF PUBLIC MEETING AT CDC

The CFIDS Association of America just received this advance notice of the

following public meeting. The Federal Register announcement, copied below,  is

expected to be published on April 15. The Association encourages all those who

are interested in the CDC's research to express their views, in person or in

writing. Please send your statements directly to CDC at CFSResearchPlan@....

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CDC Stakeholders' Meeting on CFS Strategic Research Plan

 

On April 27, 2009, 1:00-5:00 PM, CDC will host an open meeting concerning

chronic fatigue syndrome (CFS).  The meeting will take place at CDC's Global

Communications Center, Building 19, Auditorium B2, 1600 Clifton Road NE,

Atlanta, Georgia 30333, and is open to the public, limited only by the space

available.

 

The purpose of the public meeting is to solicit input from interested parties on

issues that CDC will consider as it develops a five-year strategic plan for its

CFS research program.  Input is sought only on the CFS strategic research plan,

not on CDC's overall CFS program.  As CDC is one of many institutions conducting

research on chronic fatigue syndrome, the strategic plan will only address

research that is within CDC's purview. 

 

Topics Include: The objective of the five-year strategic plan is to conduct

public health research leading to the control and prevention of medically

unexplained chronically fatiguing illnesses, in particular CFS.  The agenda will

focus on the goals and objectives of CDC's CFS research program in five major

categories: 

Studies of Defined Populations

Provider-based Patient Registries

In-hospital Clinical Studies

Laboratory Studies

Provider and Public Educational Intervention Research

The agenda does not include development of consensus positions, guidelines, or

discussions or endorsements of specific commercial products.  Agenda items are

subject to change as priorities dictate.   Members of the public wishing to make

an oral statement during the meeting should limit their remarks to five minutes

and should address the research agenda.  Written comments and suggestions from

the public on the research agenda are encouraged and may be submitted to the

email address listed below by April 22, 2009.  While CDC will carefully consider

the individual comments and opinions it receives, it will retain discretion in

its decision-making process.  A draft strategic plan will also be presented at

the Chronic Fatigue Syndrome Advisory Committee meeting held May 27-28, 2009

(http://www.hhs.gov/advcomcfs/).   

Background: CDC recently solicited and considered recommendations from an

external review panel that evaluated the research and professional education

components of the CFS research program.  The panel's report summarizing the

findings of the peer review has been published on the CDC CFS website at

www.cdc.gov/cfs/pdf/cdc_cfs_research_program-external_review.pdf.  In brief, the

panel noted that: (1) the CDC team currently leads the world in both the breadth

and depth of their research into CFS; (2) the efforts of CDC have highlighted

the public health importance of CFS; (3) all current research projects address

important issues; and (4) CDC is uniquely positioned to conduct a broadly based

research program derived from the population, a large-scale educational outreach

program (particularly to healthcare professionals) and to provide expert

web-based resources for patients, their families and non-healthcare

professionals.  The report included several

valuable recommendations which CDC has begun to implement, starting with the

development of a strategic plan to drive the program's research, prevention, and

control activities for the next five years.  This meeting will provide input to

that strategic plan.

 

Persons anticipating attending the meeting are requested to send written

notification by April 22, 2009, including name, organization (if applicable),

address, phone, fax, and email addresses to the contact below.  Additional

information on visiting CDC is available at

http://www.cdc.gov/about/resources/visitGuide.htm.

 

For Further Information Contact:  CFSResearchPlan@...