The Erlangen Glaucoma Registry: a Scientific Database for Longitudinal Analysis of Glaucoma
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Abstract
Background: Due to the slow progression of the Glaucoma disease, a large study population and long-time observations are needed to gain insights into its long-term effects and progression rates. Since modalities can export data in machine-readable formats, statistical analyses of the large number of examinations is feasible. These data have been integrated in a central patient registry, the Erlangen Glaucoma Registry (EGR). Objectives: The primary focus of the EGR system design has been its fitness for analyses. It holds almost all the available research data for registered glaucoma patients. This allows for cross-sectional and longitudinal observations and for evaluation of prognostic validity of diagnostic procedures. Methods: An adequate technology for integration of data and flexibility in data analysis is a database management system (DBMS). Here, a careful schema design is mandatory. Adding new modalities leads to schema modifications which are supported by defining a core database schema and attaching all data to this core. On that basis, a large number of modalities have been connected to the EGR. Results: The registry contains data of 1,400 patients in the main longitudinal study. It has successfully helped in scientific research, as can be seen in a large number of published papers. For example, validation of new sensory physiological methods requires patients with reliable diagnoses. The existence of a well-documented patient collective facilitated finding such patients. Conclusions: The EGR holds a unique amount of available data gathered in large longitudinal studies. It was successful in terms of medical results obtained. Developed as an evolutionary system, it can easily be extended.