Evaluation of a Digital Dementia Registry's IT Architecture After a Three-Year Period in Practice: digiDEM Bayern

Abstract

Introduction: The project "digiDEM Bayern" aims to set up a registry with long-term follow-up data on people with dementia and their family caregivers. For that purpose an Electronic Data Capture (EDC) system linked with a Participant Management (PM) system has been established. This study evaluates the acceptance and usability of the IT tools supporting all data management processes in order to further improve the system and associated processes.

Methods: For this purpose we collected the key numbers of the registry, and used the System Usability Scale (SUS) to evaluate the interactions of the data management systems in a wide area.

Results: Thirty-six research partners (RP) and six study team (ST) members completed the anonymous online survey. The EDC system overall reached an average SUS score of 73.42 and the PM system of 77.92.

Discussion: The two systems fulfil their required task and, therefore, simplify the work of the RP in the data collection process and of the ST during the data quality checks.

Conclusion: Integrating the used systems is therefore recommended for registry studies in other medical areas.

Keywords: Dementia; Evaluation; IT Architecture; Online Survey; Registry.