{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,14]],"date-time":"2025-12-14T16:13:25Z","timestamp":1765728805604,"version":"build-2065373602"},"reference-count":68,"publisher":"Georg Thieme Verlag KG","issue":"03","license":[{"start":{"date-parts":[[2021,6,16]],"date-time":"2021-06-16T00:00:00Z","timestamp":1623801600000},"content-version":"vor","delay-in-days":46,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"name":"Bavarian State Ministry of Health and Care","award":["G42d-G8300\u20132017\/1606\u201383"],"award-info":[{"award-number":["G42d-G8300\u20132017\/1606\u201383"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Appl Clin Inform"],"published-print":{"date-parts":[[2021,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Background\u2003Registries 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.<\/jats:p><jats:p>Objective\u2003The 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.<\/jats:p><jats:p>Methods\u2003The 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.<\/jats:p><jats:p>Results\u2003The 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.<\/jats:p><jats:p>Conclusion\u2003This 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.<\/jats:p>","DOI":"10.1055\/s-0041-1731286","type":"journal-article","created":{"date-parts":[[2021,6,16]],"date-time":"2021-06-16T22:48:23Z","timestamp":1623883703000},"page":"551-563","source":"Crossref","is-referenced-by-count":7,"title":["Designing and Implementing an IT Architecture for a Digital Multicenter Dementia Registry: digiDEM Bayern"],"prefix":"10.1055","volume":"12","author":[{"given":"Michael","family":"Reichold","sequence":"additional","affiliation":[{"name":"Department of Medical Informatics, Friedrich-Alexander-University Erlangen-N\u00fcrnberg (FAU), Erlangen, Germany"}]},{"given":"Nikolas","family":"Dietzel","sequence":"additional","affiliation":[{"name":"Interdisciplinary Center for Health Technology Assessment (HTA) and Public Health (IZPH), Friedrich-Alexander University Erlangen-N\u00fcrnberg (FAU), Erlangen, Germany"}]},{"given":"Christina","family":"Chmelirsch","sequence":"additional","affiliation":[{"name":"Interdisciplinary Center for Health Technology Assessment (HTA) and Public Health (IZPH), Friedrich-Alexander University Erlangen-N\u00fcrnberg (FAU), Erlangen, Germany"}]},{"given":"Peter L.","family":"Kolominsky-Rabas","sequence":"additional","affiliation":[{"name":"Interdisciplinary Center for Health Technology Assessment (HTA) and Public Health (IZPH), Friedrich-Alexander University Erlangen-N\u00fcrnberg (FAU), Erlangen, Germany"}]},{"given":"Elmar","family":"Graessel","sequence":"additional","affiliation":[{"name":"Center for Health Services Research in Medicine, Department of Psychiatry and Psychotherapy, University Hospital Erlangen, Friedrich-Alexander University Erlangen-N\u00fcrnberg (FAU), Erlangen, Germany"}]},{"given":"Hans-Ulrich","family":"Prokosch","sequence":"additional","affiliation":[{"name":"Department of Medical Informatics, Friedrich-Alexander-University 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