SolveCFS BioBankJuly 8, 2013
Providing Key Ingredients for Research
A laboratory experiment is a lot like being a master chef – you have to mix together the right ingredients, in the right amount to get the correct outcome. In research, the most important ingredient is ”the sample.” Without the best quality sample, research experiments fail – or worse yet — give misleading results that can send investigators down the wrong path. The SolveCFS BioBank & Patient Registry provides the necessary samples.
Why the SolveCFS BioBank & Patient Registry?
- The availability of clinical information and samples lowers the barrier and costs to researchers.
- We use safeguards to assure the confidentiality and integrity of clinical information and samples.
- Participants are assigned a unique hash code so data and samples from one person can be used in multiple studies and then associated back to the individual.
- The biobank serves as an archive of results to keep you up to date – Biobank participates decide whether to participate in one or many studies.
We know that identifying safe and effective treatments for ME/CFS is going to require a number of key ingredients. Linking data generated on a sample from our SolveCFS BioBank & Patient Registry participants is one of the most important and valuable assets we bring to ME/CFS research.
Who can participate?
How do I participate?
What is the SolveCFS BioBank & Patient Registry?
- We have partnered with Vanderbilt University to use their web-based electronic data capture platform (called REDCap) to build and manage online surveys and databases quickly and securely.
- After signing a consent form Biobank participants provide basic information (e.g., name, age, sex) and specific clinical information (e.g., medical history, medication use, family history). This allows us to match the right people with the right research..
- We provide the right sample for research using an on-demand system. Researchers tell us what kind of sample they need and we get it.
- We provide collection kits to participants who go to their doctor or a local laboratory to have the sample collected.
Is it safe and secure?
- The REDCap data capture platform we use for the SolveCFS BioBank & Patient Registry is also used by 723 institutions in 59 countries supporting 79,000 projects with over 103,000 users spanning numerous research focus areas.
- REDCap adheres to the standards for protecting and keeping private health information secure.
“The BioBank’s a really great resource. I really appreciate having access to it.” —Steve Elledge, PhD, Professor of Genetics, Harvard Medical School
We hope that information gained from researchers who obtain samples from the SolveCFS BioBank & Patient Registry will help in the early detection, objective diagnosis and effective treatments and interventions of individuals affected by ME/CFS.
Contact SMCI’s BioBank Coordinator:
Research, Biobank & Patient Registry Coordinator
704-364-0016 EXT 204