Hua Min1, Riki Ohira2, Michael A Collins3, Jessica Bondy4, Nancy E Avis5, Olga Tchuvatkina3, Paul K Courtney6, Richard P Moser7, Abdul R Shaikh8, Bradford W Hesse7, Mary Cooper9, Dianne Reeves10, Bob Lanese11, Cindy Helba12, Suzanne M Miller3, Eric A Ross3. 1. Department of Health Administration and Policy, College of Health and Human Services, George Mason University, Fairfax, Virginia, USA Fox Chase Cancer Center, Temple University Health, Philadelphia, Pennsylvania, USA. 2. Booz Allen Hamilton, Rockville, Maryland, USA. 3. Fox Chase Cancer Center, Temple University Health, Philadelphia, Pennsylvania, USA. 4. University of Colorado Denver, Denver, Colorado, USA. 5. Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA. 6. Dana-Farber Cancer Institute, Boston, Massachusetts, USA. 7. Behavioral Research Program, National Cancer Institute, Rockville, Maryland, USA. 8. PricewaterhouseCoopers LLP, McLean, Virginia, USA. 9. Science Applications International Corporation, McLean, Virginia, USA. 10. National Cancer Institute, Rockville, Maryland, USA. 11. Ireland Cancer Center, Case Western Reserve University, Cleveland, Ohio, USA. 12. Westat, Rockville, Maryland, USA.
Abstract
OBJECTIVE: In an effort to standardize behavioral measures and their data representation, the present study develops a methodology for incorporating measures found in the National Cancer Institute's (NCI) grid-enabled measures (GEM) portal, a repository for behavioral and social measures, into the cancer data standards registry and repository (caDSR). METHODS: The methodology consists of four parts for curating GEM measures into the caDSR: (1) develop unified modeling language (UML) models for behavioral measures; (2) create common data elements (CDE) for UML components; (3) bind CDE with concepts from the NCI thesaurus; and (4) register CDE in the caDSR. RESULTS: UML models have been developed for four GEM measures, which have been registered in the caDSR as CDE. New behavioral concepts related to these measures have been created and incorporated into the NCI thesaurus. Best practices for representing measures using UML models have been utilized in the practice (eg, caDSR). One dataset based on a GEM-curated measure is available for use by other systems and users connected to the grid. CONCLUSIONS: Behavioral and population science data can be standardized by using and extending current standards. A new branch of CDE for behavioral science was developed for the caDSR. It expands the caDSR domain coverage beyond the clinical and biological areas. In addition, missing terms and concepts specific to the behavioral measures addressed in this paper were added to the NCI thesaurus. A methodology was developed and refined for curation of behavioral and population science data. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
OBJECTIVE: In an effort to standardize behavioral measures and their data representation, the present study develops a methodology for incorporating measures found in the National Cancer Institute's (NCI) grid-enabled measures (GEM) portal, a repository for behavioral and social measures, into the cancer data standards registry and repository (caDSR). METHODS: The methodology consists of four parts for curating GEM measures into the caDSR: (1) develop unified modeling language (UML) models for behavioral measures; (2) create common data elements (CDE) for UML components; (3) bind CDE with concepts from the NCI thesaurus; and (4) register CDE in the caDSR. RESULTS: UML models have been developed for four GEM measures, which have been registered in the caDSR as CDE. New behavioral concepts related to these measures have been created and incorporated into the NCI thesaurus. Best practices for representing measures using UML models have been utilized in the practice (eg, caDSR). One dataset based on a GEM-curated measure is available for use by other systems and users connected to the grid. CONCLUSIONS: Behavioral and population science data can be standardized by using and extending current standards. A new branch of CDE for behavioral science was developed for the caDSR. It expands the caDSR domain coverage beyond the clinical and biological areas. In addition, missing terms and concepts specific to the behavioral measures addressed in this paper were added to the NCI thesaurus. A methodology was developed and refined for curation of behavioral and population science data. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Entities:
Keywords:
Behavioral Measure; Common Data Element; Data Sharing; Grid Infrastructure; Ontology; Vocabulary
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