Abstract
To complete large-scale clinical research, organizations must share data. Because institutional database schemas are inherently heterogeneous, they need a standard metadata representation in order to exchange and combine data for multi-center research. The AGNIS application (A Growable Network Information System) facilitates the exchange of hematopoietic cell transplantation outcomes data using data standards. However, adoption rates remain low due to a significant mapping burden. The AGNIS experience shows that developing a data standard is not enough. Tools and resources are needed to facilitate utilization of the standard.
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Renner, R., Carlis, J., Maiers, M., Rizzo, J. D., O’Neill, C., Horowitz, M., … Confer, D. (2015). Integration of hematopoietic cell transplantation outcomes data : Data standards are not enough. In Lecture Notes in Computer Science (including subseries Lecture Notes in Artificial Intelligence and Lecture Notes in Bioinformatics) (Vol. 9162, pp. 139–146). Springer Verlag. https://doi.org/10.1007/978-3-319-21843-4_11
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