SolveCFS BioBank – Get ready for research!February 3, 2017
The SolveCFS BioBank is the Solve ME/CFS Initiative’s innovative approach to patient-centered research; it’s how we collect the “big data” we need to solve ME/CFS. Unlike conventional biobanks that collect samples and medical information waiting for a researcher to use it, we’ve designed the SolveCFS BioBank as an “on-demand” research system to give scientists access to the right patient and the right sample when needed.
We urge you—whether an ME/CFS patient or not—to sign up for the Solve CFS BioBank. Currently anyone in the world is able to join the SolveCFS BioBank. It is free and takes only a few minutes. When you decide that you are interested in participating, we will send you a consent form. Once we have your consent, we will send you questions that help us create your “Research Ready” profile.
Here are the simple steps to follow to become a Research Ready SolveCFS BioBank participant:
Step 1: Contact
Contact our SolveCFS BioBank Coordinator by email or phone to receive a brochure that tells you about the SolveCFS BioBank along with an informed consent document. Contact Gloria at BioBank@SolveCFS.org or 704-362-2343
Step 2: Consent
If you want to become a Research Ready SolveCFS BioBank participant, sign the informed consent, make a copy and return the original to the SolveCFS BioBank Coordinator. Mail to SMCI, Attn. BioBank Coordinator, 5455 Wilshire Blvd, Ste 1903, Los Angeles, CA 90036-0007
Step 3: Survey
When we receive your consent, we will send email with a link to a short survey for you to complete. This allows us to generate a code that is unique to you and helps to protect your private information.
Step 4: Matching Information
Some time thereafter, you will receive another email with a link to a survey that collects more detailed information about you and your health. This information lets us match you with the right ME/CFS research study.
Step 5: Sample Kit
When you are a match for a specific research project, you will be sent a kit to collect the specific type of sample needed for the research. This could be saliva, blood or other types of body fluids. Everything you need to ensure the sample is collected properly and returned to the SolveCFS BioBank is provided.