Information for Prospective ControlsOctober 16, 2016
The Solve ME/CFS Initiative is a member of the Genetic Alliance BioBank, an organization that provides storage facilities and support to organizations like Solve ME/CFS Initiative to collect and store clinical information and biological samples to aid in research on chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome or CFIDS).
CFS is a complex and debilitating chronic illness that affects the brain and multiple body systems. It affects millions of adults and children worldwide; there is no definitive cause and treatment is aimed at relief of symptoms.
To advance research, the Solve ME/CFS Initiative has established the SolveCFS BioBank, a bank of biological samples (such as blood, tissue, cells, DNA or other types of samples) at the Genetic Alliance laboratory facility from people affected by CFS and unaffected individuals (controls) in general good health aged 10 and older.
As a research-support organization, we feel it is important to explain to you completely what is involved in donating a sample of blood and a cheek swab from your mouth, with plenty of opportunity for you to ask questions. You will go through a process to help you make this decision freely. You may choose to donate a sample, to wait until a later time to donate a sample, or not to donate at all. You can withdraw your participation at any time.
If you decide to donate a sample, you will be asked to sign a consent form. You should keep a copy of the consent form for your records. It will have a phone number on it to call if you have questions. Once we receive your signed consent form, we will arrange to have a sample collection kit sent to you with detailed instructions and postage-paid return mailers. The SolveCFS BioBank will keep your identifying information (name and address) in a locked, secure location. After the laboratory receives your samples, your name and all other identifying information will be removed from the samples and labeled with a coded number to protect your privacy and confidentiality.
You will also be asked to provide information about your health history, medication usage, family health history and current symptoms using paper or online forms. When this information is received, your identifying information will be removed and it will be coded with the same number as your samples.
It’s important to keep in mind that the collection of these samples and this information will be done for the purpose of research. Therefore, you will not receive personal results about any tests performed using your samples. The Solve ME/CFS Initiative will periodically inform the community about how SolveCFS BioBank samples are being used and the results of research conducted. You may be recontacted from time-to-time to update your information or provide additional samples.
If you are interested in additional information, please call Gloria E. Smith at (704) 362-2343, or e-mail Gloria at firstname.lastname@example.org to indicate your interest. We will provide you with a copy of the informed consent form for you to review before making a decision about donating a sample.