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Description

The CureCloud Direct-to-Patient Registry (CC-DTP) is a prospective linked data set containing patient self-reported data, electronic health record abstractions, a myeloma-specific gene panel sequencing, and exome genomic panel sequencing. The CC-DTPs goal is to accumulate data on 5000+ multiple myeloma (MM) patients, and later, additional data types including proteomic immune profiles, patient-reported outcomes, and medical claims, to provide a full and comprehensive view of MM patients for a researcher, clinician, and patient or caregiver use.

Learning Objective: Illustrate how well-defined architecture of the program is allowing the CureCloud to ensure that all aspects of patient privacy are protected, data is made available to the right end users for the right use cases.
Demonstrate how this architecture helped by documenting strategies to manage and ingest vast amount of genomic and clinical data generated by two disparate genomic platforms, included using national data standards wherever possible, to ensure maximal interoperability of the asset for end users.
Show how documentation of the data flow of a prospective, linked, direct-to-patient multiple myeloma registry through the use of multiple use-cases

Authors:

Steve Labkoff (Presenter)
Multiple Myeloma Research Foundation

Shaadi Mehr, Multiple Myeloma Research Foundation
Christopher Williams, Multiple Myeloma Research Foundation
Leon Rozenblit, Prometheus Research, LLC
Charles Tirrell, Prometheus Research, LLC
David Voccola, Prometheus Research, LLC
Eugene Hui, Broad Institute of MIT and Harvard
Scott Longley, Broad Institute of MIT and Harvard
Devon Bush, Broad Institute of MIT and Harvard
Esme Baker, Broad Institute of MIT and Harvard
Simone Maiwald, Broad Institute of MIT and Harvard

Presentation Materials:

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