The tools are now available and allow researchers to access and share data and biospecimens
RESEARCH TRIANGLE PARK, N.C. — RTI International, a nonprofit research institute, has developed two new research tools to help advance myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research. The tools are now available and allow researchers to access and share data and biospecimens.
ME/CFS is a disabling and complex disease that affects millions of people worldwide, but much is still not known about its causes, diagnostic markers and progression, and there are currently no FDA-approved treatments for the disease.
As the Data Management and Coordinating Center (DMCC) for the National Institutes of Health (NIH)-funded ME/CFS Collaborative Research Centers Network (MECFSnet), RTI provides infrastructure and support to foster collaborative, multi-site research. As part of these activities, RTI has developed new research tools to accelerate the pace of learning about the biological processes that cause ME/CFS and identifying targets for better diagnosis and treatment.
“The mapMECFS and searchMECFS tools were developed to make critical study data more discoverable and accessible to ME/CFS researchers,” said Matthew Schu, Ph.D., a bioinformatician at RTI and DMCC Associate Director. “By reducing the burden finding results and metadata from existing datasets, these tools promise to bring study data together in new ways and thereby increase opportunities for new discovery.”
mapMECFS is an online data sharing platform that allows researchers to discover, share, and access data from multi-omic studies. The tool allows researchers to search the contents of data sets across multiple studies, quickly compare results for specific molecules or markers of interest and download relevant data to be used for exploration or validation studies. The platform also encourages and facilitates sharing of new data by capturing key study metadata to make results easier to find, enabling a broader view of published research and facilitating data sharing and discovery.
searchMECFS is an online, interactive search tool that allows researchers to query and request available biospecimens (e.g., DNA, RNA, urine, plasma, and peripheral blood mononuclear cells) based on specific demographic and clinical characteristics. It facilitates the use of biospecimens for research on ME/CFS by using the study participants’ demographic and clinical characteristics to identify specific biospecimens available for research purposes.
The search MECFS tool also enables researchers to determine biospecimen availability and helps initiate the process of applying for access to biospecimens to be used in research studies. Investigators may also request access to just the clinical data for analysis. Currently, searchMECFS houses clinical data from the Chronic Fatigue Initiative study and information about associated biospecimens; however, long-term goals include adding additional ME/CFS datasets and biospecimens.
“RTI and the ME/CFS DMCC are pleased to share these two innovative tools to help advance the understanding of ME/CFS and its underlying biological mechanisms,” said Linda Brown, Dr.PH, a senior epidemiologist at RTI and DMCC Principal Investigator. “Our ultimate goal is to optimize the use of these resources by increasing the number of datasets and specimens accessible to ME/CFS researchers.”
More information is available via NIH.