CIBMTR CDE Curation Team
The Center for International Blood and Marrow Transplant Research (CIBMTR) curation team consists of five members; Robinette Renner, Data Solutions Manager and four curators. As a team, we create, analyze, and review metadata. The data capture requirements (e.g. data type, maximum length, allowable values) for each case report form question are assessed and with a close attention to detail and best practices, we curate or modify precise and high-quality Common Data Elements (CDE).
The curation team also creates, modifies, and maintains field and data dictionary codes (DDCs) entries in the FormsNet Form Definition Manager (FDM). New DDCs are created and existing DDCs are modified, as needed, either manually or by association with Common Data Elements (CDEs) from the cancer Data Standards Registry and Repository (caDSR). The Metadata Team and its business partners work collaboratively to determine DDC requirements and resolve defects.
Team Leads:
Robinette Renner: Data Solutions Manager, CIT
Angela: Concept Management
Angela is the team lead for concept management and is the liaison between the Center for International Blood and Marrow Transplant Research (CIBMTR) and the National Cancer Institute (NCI) for concept issues. She is responsible for maintaining the approximately 1,400 CIBMTR-created concepts in a repository that is a subset of the National Cancer Institute Thesaurus.
Requesting new concepts be added to the NCI Thesaurus requires her to research the meaning of clinical terms, consult with CIBMTR subject matter experts, and collaborate with NCI's Enterprise Vocabulary Services. Existing concepts are monitored for definition modifications and other changes that occur over time. When found, the affected CDEs are updated, versioned, or retired, as appropriate. These changes are then communicated to the Metadata Team.
Angela also acts as a liaison with the cancer Data Standards Registry and Repository (caDSR) to perform routine maintenance and cleanup of Common Data Elements (CDEs). kummerow@wildblue.net or akummero@mcw.edu
Michele: Mappings
Michele is the team lead for metadata mapping. These complex mappings entail associating data collection form metadata with the appropriate data point enabling the correct population of the outcomes database through the AGNIS application. mnych@nmdp.org
Sandy: Technical Reviews and Form Revisions
Sandy is the team lead for the technical review and analyses of the metadata. Using detailed Microsoft Excel spreadsheets, the metadata is reviewed for quality, consistency, and reuse. When necessary, web-based research is performed to determine the clinical meaning of form questions so that all form questions are precisely defined. Sandy is able to detect technical errors in the construction of the Common Data Elements (CDE) as well as subtle semantic errors. With the meticulous review of the metadata, the transplant community can rely on more precise CDEs and greater reuse of quality components.
Sandy also works with our business partners on the development of new forms and the revision of existing forms to ensure semantically equivalent questions are harmonized within and across forms leading to greater reuse of Data Dictionary Codes (DDC) and Common Data Elements (CDE). ssorense@nmdp.org
Wendy: FDM Application
Wendy is the team lead for the FormsNet Form Definition Manager (FDM), an internal CIBMTR application developed for the creation and maintenance of data collection forms, including form questions, data dictionary codes, and data validations. Wendy works with the various business teams, developers, and programmers to create metadata specific functionality requirements and perform user acceptance testing. wzhang@nmdp.org