title: Information Management in Cancer Registries: Evaluating the Needs for Cancer Data Collection and Cancer Research.
abstract: Cancer registry data collection involves, at a minimum, collecting data on demographics, tumor characteristics, and treatment. A common, identified, and standardized set of data elements is needed to share data quickly and efficiently with consumers of this data. This project highlights the fact that, there is a need to develop common data elements; Surveys were developed for central cancer registries (CCRs) and cancer researchers (CRs) at NCI-designated Cancer Centers, in order to understand data needs. Survey questions were developed based on the project focus, an evaluation of the research registries and database responses, and systematic review of the literature. Questions covered the following topics: 1) Research, 2) Data collection, 3) Database/ repository, 4) Use of data, 5) Additional data items, 6) Data requests, 7) New data fields, and 8) Cancer registry data set. A review of the surveys indicates that all cancer registries' data are used for public health surveillance, and 96% of the registries indicate the data are also used for research. Data are available online in interactive tables from over 50% of CRs and 87% of CCRs. Some other survey responses indicate that CCR treatment data are not complete for example treatment data, however cancer researchers are interested in treatment variables from CCRs. Cancer registries have many data available for review, but need to examine what data are needed and used by different entities. Cancer Registries can further enhance usage through collaborations and partnerships to connect common interests in the data by making registries visible and accessible.
authors.affiliation: Department of Health Management and Informatics, School of Medicine, University of Missouri, Columbia, Missouri ; MU Informatics Institute, University of Missouri, Columbia, Missouri ; Missouri Cancer Registry and Research Center, Health Management and Informatics, School of Medicine, University of Missouri, Columbia, Missouri.
authors.forename: Iris
authors.initials: I
authors.lastname: Zachary
authors.affiliation: Department of Health Management and Informatics, School of Medicine, University of Missouri, Columbia, Missouri ; MU Informatics Institute, University of Missouri, Columbia, Missouri.
authors.forename: Suzanne A
authors.initials: SA
authors.lastname: Boren
authors.affiliation: Department of Health Management and Informatics, School of Medicine, University of Missouri, Columbia, Missouri ; MU Informatics Institute, University of Missouri, Columbia, Missouri ; Missouri Cancer Registry and Research Center, Health Management and Informatics, School of Medicine, University of Missouri, Columbia, Missouri.
authors.forename: Eduardo
authors.initials: E
authors.lastname: Simoes
authors.affiliation: Department of Health Management and Informatics, School of Medicine, University of Missouri, Columbia, Missouri ; MU Informatics Institute, University of Missouri, Columbia, Missouri ; Missouri Cancer Registry and Research Center, Health Management and Informatics, School of Medicine, University of Missouri, Columbia, Missouri.
authors.forename: Jeannette
authors.initials: J
authors.lastname: Jackson-Thompson
authors.affiliation: Department of Health Management and Informatics, School of Medicine, University of Missouri, Columbia, Missouri ; MU Informatics Institute, University of Missouri, Columbia, Missouri.
authors.forename: J Wade
authors.initials: JW
authors.lastname: Davis
authors.affiliation: Department of Health Management and Informatics, School of Medicine, University of Missouri, Columbia, Missouri ; MU Informatics Institute, University of Missouri, Columbia, Missouri.
authors.forename: Lanis
authors.initials: L
authors.lastname: Hicks
keywords: Disease Registries; Disease Reporting; Public Health