Full text of announcement can be found on the SolveCFS website, including criteria for participation, consent form, etc.
The SolveCFS BioBank will collect and store a bank of biological samples (such as blood, tissue, cells and DNA) and clinical information at the Genetic Alliance laboratory facility from individuals with CFS and unaffected individuals aged 10 and older. The samples and information will be used by approved researchers to identify biomarkers, explore the causes of and potential treatments for CFS.
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Collection of biological samples and clinical information is for the sole purpose of advancing research. Participants in the SolveCFS BioBank will not receive personal results about any tests performed using their samples. The CFIDS Association of America will periodically inform the patient and research communities 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 medical journals. Participants may be recontacted from time-to-time by the Association to update demographic, mailing and clinical information, to provide additional samples as new studies are approved, or to participate in other types of follow-up research.
In compliance with the design for the initial BioBank studies, patients are being recruited by collaborating expert CFS clinicians to ensure that subjects in the study have well-characterized CFS. Family members and neighborhood control subjects who are in good health will also be invited to participate. All interested persons must be at least 10 years old to participate and must give informed consent before being enrolled in the SolveCFS BioBank.