The Solve ME/CFS Initiative has received an award through the Robert Wood Johnson Foundation White Label PEER (Platform for Engaging Everyone Responsibly) program. The competitive grants program is managed by Genetic Alliance, which represents 10,000 organizations, 1,200 of which are disease organizations. Sharon Terry is Genetic Alliance President and CEO and a visionary behind PEER and the RWJF White Label project.
The Solve ME/CFS Initiative was one of only six disease-related organizations to be selected to participate in the program and utilize PEER to engage our community in participant-centric research.
Our organization will use the award to boost our Solve CFS BioBank and Patient Registry, which has been experiencing marked growth in the past year in the number of consented patients and growing requests from researchers for patient data. The registry will enable us to acquire and offer new services, like:
- Performing longitudinal and cross-sectional studies.
- Informing clinical trial design.
- Sharing information with organizations and researchers for educational and research purposes.
- Collecting demographic, genetic, social sciences, health disparity, comorbidity and treatment outcome data.
- Conducting relevant and targeted surveys.
- Creating an information hub that will benefit the ME/CFS community as a whole.
“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. “The establishment of the PEER network is a logical next step in our mission to support patient-centered research.”
The national registry will yield additional benefits to our organization and the ME/CFS community. Specifically:
1) We will be able to attract new participants, including improved demographic and ethnic representations. Investigators we support through the BioBank will have access to this robust registry for a deeper analysis and follow-up research.
2) We will be able to strengthen our advocacy efforts for the aggressive increase in federal research funding as a result of generating verifiable and large data sets with reliable metrics derived directly from the patient community.
3) We will be able to create relevant content for commentaries and disseminate credible information to the ME/CFS community from the availability of accessible, data-driven analysis and statistical evaluation relevant to ME/CFS patients
The PEER platform is fully aligned with our organization’s longstanding mission to reduce the knowledge gap in the field of ME/CFS through research and services that will help make ME/CFS understood, diagnosable and treatable. It is also a step toward realizing the Chronic Fatigue Syndrome Advisory Committee’s recommendation to establish a national patient registry.