January 2014

Efficient capture of high-quality data on outcomes of treatment for macular diseases: the fight retinal blindness! Project

Mark C Gillies, Richard Walton, Julines Liong, Jennifer J Arnold, Ian McAllister, Nigel Morlet, Alex Hunyor, Robyn Guymer, Jill Keeffe, Rohan Essex, Amparo Herrera-Bond, Briony Glastonbury, Judy M Simpson, Daniel Barthelmes


Purpose: To describe the development of a web-based high-quality data collection tool to track the outcomes of treatment of macular disease in routine practice.

Methods: Testing of a larger data collection tool established which fields a clinician would reliably fill out. The program, which was developed using freely available software, consists of modules interacting with a core system. The module for neovascular age-related macular degeneration is described here.

Results: Data for initial visits can be entered within 30 seconds, 15 seconds for follow-up visits. Fifteen centers from Australia, New Zealand, and Switzerland are currently contributing data. Finalized data from 2,052 eyes of 1,693 participants dating from January 2006 were analyzed. Median (25th and 75th percentiles) visual acuity at the index visit was 55 (41, 68) logarithm of the minimum angle of resolution letters with the following lesion types: minimally classic 17.2%, predominantly classic 24.6%, occult 52.0%, idiopathic polypoidal choroidal vasculopathy 1.2%, and retinal angiomatous proliferation 3.2%.

Conclusion: This software tool will facilitate the collection of large amounts of data on the routine use of treatments of neovascular age-related macular degeneration. This will allow us to analyze important potentially modifiable variables, such as the effect of different treatment patterns on visual outcomes, and to evaluate new treatments as they are introduced into practice.