Designing and Implementing an IT Architecture for a Digital Multicenter Dementia Registry: digiDEM Bayern
| Autor: | Elmar Graessel, Christina Chmelirsch, Hans-Ulrich Prokosch, Michael Reichold, Peter L. Kolominsky-Rabas, Nikolas Dietzel |
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| Rok vydání: | 2021 |
| Předmět: |
data collection
Process management Electronic data capture workflow Computer science Enterprise architecture Health Informatics State of the Art/Best Practice Paper 03 medical and health sciences 0302 clinical medicine Health Information Management participant management Humans Prospective Studies 030212 general & internal medicine Software system Data collection research planning and conduct registries Computer Science Applications Workflow Caregivers Data quality Management system Dementia Electronic data Information Technology 030217 neurology & neurosurgery |
| Zdroj: | Applied Clinical Informatics |
| ISSN: | 1869-0327 |
| DOI: | 10.1055/s-0041-1731286 |
| Popis: | Background Registries are an essential research tool to investigate the long-term course of diseases and their impact on the affected. The project digiDEM Bayern will set up a prospective dementia registry to collect long-term data of people with dementia and their caregivers in Bavaria (Germany) supported by more than 300 research partners. Objective The objective of this article is to outline an information technology (IT) architecture for the integration of a registry and comprehensive participant management in a dementia study. Measures to ensure high data quality, study governance, along with data privacy, and security are to be included in the architecture. Methods The architecture was developed based on an iterative, stakeholder-oriented process. The development was inspired by the Twin Peaks Model that focuses on the codevelopment of requirements and architecture. We gradually moved from a general to a detailed understanding of both the requirements and design through a series of iterations. The experience learned from the pilot phase was integrated into a further iterative process of continuous improvement of the architecture. Results The infrastructure provides a standardized workflow to support the electronic data collection and trace each participant's study process. Therefore, the implementation consists of three systems: (1) electronic data capture system for Web-based or offline app-based data collection; (2) participant management system for the administration of the identity data of participants and research partners as well as of the overall study governance process; and (3) videoconferencing software for conducting interviews online. First experiences in the pilot phase have proven the feasibility of the framework. Conclusion This article outlines an IT architecture to integrate a registry and participant management in a dementia research project. The framework was discussed and developed with the involvement of numerous stakeholders. Due to its adaptability of used software systems, a transfer to other projects should be easily possible. |
| Databáze: | OpenAIRE |
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