Development of a web-based glaucoma registry at King Khaled Eye Specialist Hospital, Saudi Arabia: A cost-effective methodology

Abstract

In this brief communication, we present the steps used to establish a web-based congenital glaucoma registry at our institution. The contents of a case report form (CRF) were developed by a group of glaucoma subspecialists. Information Technology (IT) specialists used Lime Survey softwareTM to create an electronic CRF. A MY Structured Query Language (MySQL) server was used as a database with a virtual machine operating system. Two ophthalmologists and 2 IT specialists worked for 7 hours, and a biostatistician and a data registrar worked for 24 hours each to establish the electronic CRF. Using the CRF which was transferred to the Lime survey tool, and the MYSQL server application, data could be directly stored in spreadsheet programs that included Microsoft Excel, SPSS, and R-Language and queried in real-time. In a pilot test, clinical data from 80 patients with congenital glaucoma were entered into the registry and successful descriptive analysis and data entry validation was performed. A web-based disease registry was established in a short period of time in a cost-efficient manner using available resources and a team-based approach.

International Comparison of Thalassemia Registries: Challenges and Opportunities

“…The web-based data entry was a core feature of the majority of registries within this review. In recent years, the web-based registries have become popular because they are user friendly and can be managed from different locations (42, 43).…”

Eradicating primary congenital glaucoma from Saudi Arabia: The case for a national screening program

“…Population surveys suggest that premarital counseling can successfully alter an individual’s choice of spouse after counseling 11 . An existing web-based registry of affected individuals at KKESH, may also be used to identify many of the high-risk individuals 14 . The second arm could either mirror and piggy back on to the National Program for screening of hemoglobinopathies or be focused to screen unaffected individuals pre-maritally in areas of the country with the largest number of patients with PCG 3 …”