Abstract
In the health sector, data analysis is typically performed by specialty using clinical data stored in a Clinical Data Registry (CDR), specific to that medical specialty. Therefore, if we want to analyze data from a new specialty, it is necessary to create a new CDR, which is usually done from scratch. Although the data stored in CDRs depends on the medical specialty, typically data has a common structure and the operations over it are similar (e.g., entering and viewing patient data). These characteristics make the creation of new CDRs possible to automate. In this paper, we present a software system for automatic CDR generation, called CDRGen, that relies on a metadata specification language to describe the data to be collected and stored, and the types of supported users as well as their permissions for accessing data. CDRGen parses the input specification language and generates the code needed for a functional CDR. The specification language is defined on top of a metamodel that describes the metadata of a generic CDR. The metamodel was designed taking into account the analysis of eleven existing CDRs. The experimental assessment of the CDRGen indicates that: (i) developers can create new CDRs more efficiently (in less than 2% of the typical time), (ii) CDRGen creates the user interface functionalities to enter and access data and the database to store that data, and finally, (iii) its specification language has a high expressiveness enabling the inclusion of a large variety of data types. Our solution will help developers creating new CDRs for different specialties in a fast and easy way, without the need to create everything from scratch.
P. Alves—This work was developed while the author was a Master student at IST.
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Notes
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Although, we were able to find twelve Portuguese CDRs, PRECISE Stroke was not analyzed because we saved it for validating CDRGen.
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We call historic-type entities to the entities that have the historic property. Otherwise, they are non-historic entities, i.e., entities that can only have one instance (default).
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The permissions of the administrator physician user type cannot be specified because it has always read and write permissions.
References
Santos, M.J., et al.: Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases. Acta Reumatol. Port. 42, 232–239 (2017)
Lages, N.F., Caetano, B., Fonseca, M.J., Pereira, J.D., Galhardas, H., Farinha, R.: Umedicine: a system for clinical practice support and data analysis. In: Begoli, E., Wang, F., Luo, G. (eds.) DMAH 2017. LNCS, vol. 10494, pp. 102–120. Springer, Cham (2017). https://doi.org/10.1007/978-3-319-67186-4_9
Santos, M.J., Canhão, H., Faustino, A., Fonseca, J.E.: Reuma.pt: a case study. Acta médica Port. 29(2), 83–84 (2016)
Faustino, A.: Reuma.pt - the start and the purpose. Acta Reumatol. Port. 43(1), 6–7 (2018)
Cardim, N., et al.: The Portuguese registry of hypertrophic cardiomyopathy: overall results. Rev. Port. de Cardiol. 37(1), 1–10 (2018)
Richardson, C., Rymer, J.R., Mines, C., Cullen, A., Whittaker, D.: New Development Platforms Emerge for Customer-Facing Applications. Forrester Research, June 2014
Weilkiens, T.: Systems Engineering with SysML/UML - Modeling, Analysis, Design. MK/OMG Press, February 2008
Acknowledgments
This work was supported by national funds through Fundação para a Ciência e a Tecnologia with reference UIDB/50021/2020 (INESC-ID), and UIDB/00408/2020 and UIDP/00408/2020 (LASIGE). The first author would like to thank LAIfeBlood project with reference DSAIPA/AI/0033/2019 for providing him a research grant.
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Alves, P., Fonseca, M.J., Pereira, J.D., Galhardas, H. (2021). CDRGen: A Clinical Data Registry Generator (Formal and/or Technical Paper). In: Gadepally, V., et al. Heterogeneous Data Management, Polystores, and Analytics for Healthcare. DMAH Poly 2020 2020. Lecture Notes in Computer Science(), vol 12633. Springer, Cham. https://doi.org/10.1007/978-3-030-71055-2_15
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