You + M.E. Registry and Biobank
The You + M.E. Registry and Biobank (replaces the SolveCFS BioBank & Patient Registry) is a project of the Solve ME/CFS Initiative established in 2020 as a patient-centered research resource.[1]
Patient registries and biobanks help overcome a significant obstacle in ME/CFS research by providing a research-ready community of patients and their clinical information and samples.
Mobile app[edit | edit source]
A unique feature of this registry is a mobile app.[1]
With the use of a mobile app, participants are asked to consistently report on a core set of symptoms: fatigue, brain fog, unrefreshing sleep, lightheadedness, and post-exertional malaise (PEM)., thus allowing "a moving picture of the disease and how it affects everyday life, as opposed to the single snapshot of the symptoms you might report to your healthcare team during an office visit."[2]
Data security[edit | edit source]
The data is stored in a secure database with anonymized and obvious personal identifiers are removed and is managed by Solve M.E. and our partners.[2]
Data collection[edit | edit source]
A collection kit and instructions for the collection, labeling, and shipping of the kits is sent to your address. You can take the kit to a lab (e.g. a Quest Diagnostics facility) close to where you live. Postage-paid return mailers are included. Solve ME/CFS Initiative can arrange for someone to come to your home to collect the sample, if access to a lab is not possible.[2]
