A Pan-European Approach for a Comprehensive Assessment of Patients With Age-Related Macular Disease (AMD)

Abstract

Purpose:: To present a comprehensive database for standardized assessment, integration and analysis of phenotype and genotype information in patients with AMD.

Methods:: A Java-web application based Internet accessible database has been developed to allow an easy access for participating clinicians throughout Europe and in the future worldwide. This database is part of a comprehensive consortium database established within the European integrated project (EVI-GENORET, EC-FP6-512036). It contains in addition to clinical data also information on genetics, genomics and proteomics by using the IBM® WebSphere® Information Integrator. At the site of the clinical user no additional software has to be installed and no duplicate data is stored locally. A uniform electronic case report form which is based on newly developed standardized ophthalmologic retinal assessment procedures is used for data entry on three different security levels.

Results:: Our approach has shown to grant access to this clinical database on AMD, irrespective of the operating system or hardware used locally at the participating centers. It allows that new members or associated partners can easily join the database without adapting their local computers. The implementation of an electronic case report form allows the clinician to use this database for an improved management of patient data also in the clinical routine.

Conclusions:: This data mining tool ensures complete access to all clinical data without data duplication at the individual clinical site. The standardized and comprehensive clinical assessment of patients with AMD within the larger consortium database in Europe will allow us to improve our understanding of this blinding disease in the elderly.

Keywords: age-related macular degeneration • retina • candidate gene analysis