Collaborate | Find | SolveSeptember 28, 2016
There is a big gap in the pipeline that moves basic laboratory research and discoveries into safe and effective treatments. Think of it like railroad tracks that stop at the edge of a canyon… Without a bridge to bring these remarkable discoveries to the clinic, laboratory research rarely becomes more than a science paper. There are more than 5,000 biomedical papers describing the complexity of ME/CFS and its multiple subtypes. Without ways to identify each ME/CFS subtype, even the most basic research is hard to do. Furthermore, the debilitating nature of ME/CFS has made it challenging if not impossible for patients to participate in research.
We recognized the gap between the laboratory and the clinic. We knew the bridge for this gap was a translational research infrastructure – providing the means for basic researchers to move their discoveries through the pipeline with our Research Institute Without Walls. Together we have changed the landscape of ME/CFS research to accelerate the path for safe and effective treatments.
Participatory Research – The gap between basic and clinical research exists because patients have not been part of the discovery process. Our Research Institute Without Walls uses a participatory research platform to make it easy for ME/CFS patients and people who care about them to be involved in basic and clinical research. The SolveCFS BioBank is a central component. When you choose to participate in the SolveCFS BioBank you agree to provide clinical information via a secure website; then we match you with the right basic and clinical research study. We are also actively developing other ways to facilitate your engagement in the discovery process. Participatory research puts the patient at the center of ME/CFS discovery.
Predictive Measures – Your participation provides us with the data – Big Data! — that is needed for predictive research. The Research Institute Without Walls uses an information technology platform, LogosOmics (Logos meaning ‘word” and Omics meaning ‘all’) that was built by one of our partners. LogosOmics finds and translates information by aggregating your participatory data, combining it with published biologic data and then translating it into a common, standardized medical language. With LogosOmics we will identify ME/CFS subtypes and find treatment solutions.
Personalized Treatments – The goal of our patient-centered Research Institute Without Walls is to support, conduct and partner in research that ultimately provides safe and effective treatments for every individual ME/CFS patient.
We have YOU at the center of all we do. Participate NOW:
- Learn more: The Solve ME/CFS Initiative – Fostering the Development of Safe and Effective Treatments
- Sign up for the SolveCFS BioBank
- Lend financial support; any level of investment fuels the path forward
We can’t get there without YOU; together we will Solve CFS.