You + M.E. Registry and Biobank

The SolveCFS BioBank & Patient Registry is a project of the Solve ME/CFS Initiative established in 2010 as a patient-centered research resource. It helps overcome a significant obstacle in ME/CFS research by providing a “research-ready” community of patients and their clinical information and samples. Patient confidentiality is maintained by assigning each participant a unique hash code. Anyone over the age of ten can register, including diagnosed ME or CFS patients, individuals who have symptoms but are not yet diagnosed, and family members and friends.

The SolveCFS BioBank & Patient Registry has partnered with Vanderbilt University to use their web-based Research Electronic Data Capture platform (called REDCap). REDCap is used by 1,974 active institutional partners in 105 countries supporting 283,000 projects with over 388,000 users spanning numerous research focus areas. The data platform is able to match the right people to a researcher's desired cohort using an on-demand system. Once the enrolled person is identified, SolveCFS BioBank will contact the person and provide collection kits in order to go to their doctor or a local laboratory to have the sample collected. On-demand collection eliminates the cost and space needed for the long-term storage of samples, as well as provides fresh samples to researchers.

Ramon Boghozian is the Research, Biobank & Patient Registry Coordinator.

In April 2016, Solve ME/CFS Initiative announced that it received a award from the Robert Wood Johnson Foundation to boost the Solve CFS BioBank and Patient Registry. “This award will enable us to launch a national, state-of-the-art patient registry for the disease—an unmet and urgent need in the community—and include built-in options for data sharing and collaboration among patients, researchers and other disease organizations,” said Dr. Zaher Nahle, Vice President for Research and Scientific Programs at the Solve ME/CFS Initiative.

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