FRINK Linked Data Fragments server

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• W2980456781 abstract "More than ever, there is an urgent need for a deeper understanding of the clinical, molecular and immunologic parameters involved in multiple myeloma (MM) disease initiation, progression and response to treatment. Such rich information, collected at the population level, is crucial to generate the evidence needed to ultimately make Precision Medicine a reality for all multiple myeloma patients. To this end the Multiple Myeloma Research Foundation (MMRF) has launched the MMRF CureCloud Research Initiative (NCT03657251), an Institutional Review Board (IRB) approved Direct-to-Patient (DTP) research effort aimed at enrolling 5,000 individuals from whom comprehensive molecular and immune analyses will be generated from blood specimens and the resulting data aggregated with the correlating clinical information. Blood is collected from all participants after electronic online consenting via a mailed blood kit designed for a mobile phlebotomy appointment. To support the molecular characterization of liquid biopsies, a MM-specific hybrid selection panel was developed that captures commonly altered genes in a patient's circulating-free DNA (cfDNA). Deep sequencing (80,000x depth) is performed. Because this liquid biopsy cfDNA assay may potentially be used by treating physicians for management of care, a clinical-grade (CLIA) pipeline is being established. A suite of immune profiling assays is also employed to characterize the MM blood microenvironment. Samples and derivatives generated through the CureCloud Research Initiative are banked to establish a rich collection of biospecimens for future research under the oversight of a Steering Committee created for this effort. Through the consenting process, participants also authorize linkage to their electronic medical records (EMRs) information. EMR retrieval on behalf of the consenting patient and data abstraction for use in the CureCloud Research Initiative is performed by a commercial partner. An important deliverable of the MMRF CureCloud Research Initiative is a curated dataset of integrated genomic, immune and correlating clinical data that will be made available to support scientific investigations through the MMRF CureCloud, a cloud-based platform with tools and capabilities for the seamless aggregation, integration and analysis of large collections of myeloma datasets. Truly making patients active participants in the research is also an important focus of the CureCloud Research Initiative. To that end, participants will regularly receive messages alternating between newsletters and invitation to engage in new educational modules and surveys. At the time of abstract submission, 65 participants have been enrolled onto the CureCloud Research Initiative in pilot mode and initial results will be presented. By creating a next-gen DTP real-world registry of fully linked datasets, new, not previously possible, types of queries will be enabled to improve MM patient treatments and outcomes." @default.
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• W2980456781 date "2019-10-01" @default.
• W2980456781 modified "2023-09-27" @default.
• W2980456781 title "The CureCloud Research Initiative, a Next-Gen Direct-To-Patient Clinico-Immuno-Genomic Registry" @default.
• W2980456781 doi "https://doi.org/10.1016/j.clml.2019.09.086" @default.
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