PROJECT SUMMARY/ABSTRACT The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) Network was created in 2017 to foster multidisciplinary research to inform the etiology, pathogenesis, and treatment of ME/CFS, a debilitating, complex, multisystem disorder that affects approximately 0.9% of the population worldwide. Although researchers have identified multiple hypotheses for disease etiology and differential patterns in biological processes, the underlying mechanisms that trigger ME/CFS symptoms and their treatment remain unknown. During the next cycle of the Network, a comprehensive approach is needed to (1) identify subtypes of ME/CFS based on biological markers and symptom classifications, (2) conduct longitudinal studies to understand the time course of disease and its manifestations, (3) develop and validate outcome measures for future intervention trials, and (4) identify potential treatment targets. To support these studies, the Data Management and Coordinating Center (DMCC) will serve as a foundational resource to the CRCs by providing (1) expertise in patient-centered research, data processing, and analysis; (2) communication and social media tools to actively engage the broader ME/CFS community (e.g., ME/CFS patients, clinicians, researchers); and (3) real-time study status dashboards to monitor CRC recruitment and retention and track study progress. In addition, as the Network’s current DMCC, RTI is uniquely positioned to facilitate data mining/integration and clinical data and biospecimen sharing within and outside the Network by expanding the capabilities and reach of our publicly available online ME/CFS research tools mapMECFS and searchMECFS. Specifically, the DMCC will continue to support the endeavors of the Network and the CRCs and enhance our research tools to help define the cause(s) of ME/CFS and discover better diagnostics and treatment to improve the health outcomes for individuals with ME/CFS by accomplishing our three specific aims. Aim 1. Enable novel discovery through collaborative science by expanding the content, userbase, and functionality of the mapMECFS data sharing portal. Aim 2. Advance ME/CFS research through our secure online data portal with enhanced data collection, data sharing, and clinical/biospecimen linkage tools. Aim 3. Promote research efficiency and foster collaboration and coordination by enhancing communication with ME/CFS internal and external partners and providing logistical and administrative support to the CRCs. The DMCC will be co-led by multiple Principal Investigators (mPIs) Linda Morris Brown, MPH, DrPH, and Matthew Schu, PhD. Together they bring 58 years of experience in multisite consortia coordination, project management, conducting and monitoring of observational studies, web-based data collection instruments, specimen collection, publication of results, and sharing of de-identified data. Our mPI leadership model pairing a senior epidemiologist, Dr. Brown, with a senior bioinformatician, Dr. Schu, will continue to be key to our success in effectively spanning the clinical, scientific, and technical needs of the Network.

Project Narrative ME/CFS is a debilitating and complex disorder that affects millions of people worldwide; however, the underlying mechanisms that trigger ME/CFS symptoms and their treatment remain unknown. To better understand the causes and discover better diagnostics and treatments to improve the health outcomes for individuals with ME/CFS, RTI’s DMCC will continue to support this Network by (1) offering expertise in patient- centered research, data processing, and analysis; (2) providing tools to foster communication and monitor study progress; and (3) expanding the capabilities and reach of our publicly available ME/CFS research tools.