ArticleApplied clinical informatics2021
Designing and Implementing an IT Architecture for a Digital Multicenter Dementia Registry: digiDEM Bayern.
Article in Applied clinical informatics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07721701 (Digital Dementia Registry Bavaria), which is not on this map. Cited by 7 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Digital Dementia Registry Bavaria (digiDEM Bayern)
Who cites it
7 citing papers in PubMed, 9 citations in OpenAlex.
- Uncovering sex patterns in BPSD among home-care patients: longitudinal findings from a population-based registry - digital dementia registry Bavaria.Frontiers in psychiatry · 2026Article
- A User-Centered Design Approach for a Screening App for People With Cognitive Impairment (digiDEM-SCREEN): Development and Usability Study.JMIR human factors · 2025Article
- Using Health Information Resources for People With Cognitive Impairment (digiDEM Bayern): Registry-Based Cohort Study.JMIR formative research · 2025Article
- Impact of social network composition on cognitive decline: Digital Dementia Registry Bavaria (digiDEM Bayern).PloS one · 2024Article
- Data silos undermine efforts to characterize, predict, and mitigate dementia-related missing person incidents.Healthcare management forum · 2022Article
- Article
- Usability Evaluation of an Offline Electronic Data Capture App in a Prospective Multicenter Dementia Registry (digiDEM Bayern): Mixed Method Study.JMIR formative research · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundRegistries 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.
objectiveThe 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.
methodsThe 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.
resultsThe 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.
conclusionThis 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.