Efficient capture of high-quality real-world data on treatments for glaucoma: the Fight Glaucoma Blindness! Registry

Mitchell Lawlor; Vuong Nguyen; Anne Brooks; Colin Clement; Jamie E Craig; Helen Danesh-Meyer; Ivan Goldberg; Stuart L Graham; John R Grigg; Frank Howes; Ridia Lim; Simon E Skalicky; Andrew J White; Mark Gillies

doi:10.1136/bmjophth-2021-000903

Efficient capture of high-quality real-world data on treatments for glaucoma: the Fight Glaucoma Blindness! Registry

BMJ Open Ophthalmol. 2021 Nov 5;6(1):e000903. doi: 10.1136/bmjophth-2021-000903. eCollection 2021.

Authors

Mitchell Lawlor^{1

2}, Vuong Nguyen¹, Anne Brooks^{3

4}, Colin Clement^{1

2}, Jamie E Craig⁵, Helen Danesh-Meyer⁶, Ivan Goldberg¹, Stuart L Graham^{1

7}, John R Grigg^{1

2}, Frank Howes⁸, Ridia Lim^{1

2}, Simon E Skalicky⁴, Andrew J White¹, Mark Gillies¹

Affiliations

¹ Clinical Ophthalmology & Eye Health, The University of Sydney, Sydney, New South Wales, Australia.
² Glaucoma Unit, Sydney Hospital and Sydney Eye Hospital, Sydney, New South Wales, Australia.
³ Department of Ophthalmology, University of Melbourne, Melbourne, Victoria, Australia.
⁴ Royal Victorian Eye and Ear Hospital, East Melbourne, Victoria, Australia.
⁵ Eye and Vision, Flinders Health and Medical Research Institute, Flinders University, Adelaide, South Australia, Australia.
⁶ Department of Ophthalmology, University of Auckland, Auckland, New Zealand.
⁷ Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia.
⁸ Eye and Laser Centre, Gold Coast, Queensland, Australia.

Abstract

Objective: To describe the development and implementation of a web-based high-quality data collection tool to track the outcomes of glaucoma treatments in routine practice.

Methods and analysis: This is a prospective observational registry study. An international steering committee undertook an iterative structured process to define a minimum, patient-centred data set designed to track outcomes of glaucoma treatment. The outcomes were coded into a web-based programme allowing easy access for rapid data entry. Clinicians receive personal reports enabling instant audit of their outcomes. Analyses of aggregated anonymised data on real-world outcomes are analysed and periodically reported with the goal of improving patient care.

Results: The minimum data set developed by the international steering committee includes the following: a baseline visit captures 13 mandatory fields in order to accurately phenotype each patient's subtype of glaucoma and to allow comparison between services, and a follow-up visit includes only four mandatory fields to allow completion within 30 s.Currently, there are 157 surgeons in 158 ophthalmology practices across Australia and New Zealand who are registered. These surgeons are tracking 5570 eyes of 3001 patients and have recorded 67 074 visits. The median number of eyes per surgeon is 22 eyes with a range of 1-575. The most common glaucoma procedure, excluding cataract surgery, is iStent inject, with 2316 cases.

Conclusion: This software tool effectively facilitates data collection on safety and efficacy outcomes of treatments for different subgroups of glaucoma within a real-world setting. It provides a template to evaluate new treatments as they are introduced into practice.

Keywords: glaucoma; treatment surgery.