SolveCFS BioBank for ResearchersAugust 26, 2013
The Solve ME/CFS Initiative is the leader for patient-centered research on ME/CFS. We understand that patient recruitment is the toughest and most costly aspect of research. Because we are committed to doing what we can to further the best research, we offer the SolveCFS BioBank – a state-of-the-art genetic sample collection system – to eligible ME/CFS patients and approved researchers.
The SolveCFS BioBank gives researchers access to well-characterized patient populations. SolveCFS BioBank participants include ME/CFS patients, family members and unrelated healthy controls (many matched to the same geographic region as the ME/CFS patient. All participants have provided informed consent, the opportunity to participate in multiple studies and be re-contacted and the option of participating in research of other diseases. The SolveCFS BioBank has been reviewed and received ethical approval from the Genetic Alliance Institutional Review Board (IORG0003358).
The SolveCFS BioBank uses REDCap (www.project-redcap.org), a secure web-based platform, as the registry database for the BioBank. The SolveCFS BioBank registry uses data standards to help ensure we have collecting and providing quality and robust information for you study. All SolveCFS BioBank participants are assigned a Globally Unique IDentifier (GUID) generated using the NIH NDAR applet. This allows us to share specific BioBank participant data without exposing personally identifiable information (PII). The GUID enables data from BioBank participants to be matched across labs and research studies.
We understand that the quality of the biological sample is key to successful research results. The SolveCFS BioBank uses an on-demand sample collection system so we can collect the kind of sample you need to conduct your research. Sample collection kits are sent to participants with instructions for the laboratory (if needed). We have partnered with ExamOne for expert in-home phlebotomy services. We can also conduct group collections (e.g., at meetings). All this means the right sample from the right subject for your research.