Over 100 people registered from across Australia and other countries to attend this year’s inaugural DryEyeClub webinar. The virtual event, held on 18 July 2023 marked Dry Eye Disease Awareness month and was hosted by the Save Sight Dry Eye Registry at the Save Sight Institute, The University of Sydney, Australia. The DryEyeClub provided an opportunity for patients with dry eye and the community to learn about the latest developments in tracking outcomes for and treating dry eye disease.
Chaired by Dr Maria Cabrera Aguas, post-doctoral researcher at the Save Sight Institute the webinar presented research highlights from the Save Sight Dry Eye Registry, updates on treatment options, and patient reported outcomes in dry eye. Speakers also discussed the benefits of the dry eye registry from the patient perspective.
New research collaborations informed by patient experience, such as the Save Sight Dry Eye Registry, will provide best evidence and recommendations for dry eye disease diagnosis and management
Importance of Clinical Registries
Professor Stephanie Watson OAM, highlighted the importance of clinical registries in ophthalmology and of the Save Sight Dry Eye Registry (Figure 1). The Save Sight Dry Eye Registry, launched in December 2020, is now being used by 35 clinicians from 27 sites in seven countries to monitor treatment effectiveness and patient outcomes. It can be used collaboratively by both optometrists and ophthalmologists. Professor Watson who, among several roles, is Head of Corneal Research Group at the Save Sight Institute said the benefits of registries included being able to gather and analyse what happens in everyday clinical practice in ‘real-world’ patients. This real-world data enables clinicians and researchers to find out what happens in a range of patients with their disease and its treatment, whereas clinical trials only include very similar patients. The Registry can also be used for benchmarking, as users can compare their patient outcomes with their peers.
Scientia Professor Fiona Stapleton AO, from the School of Optometry and Vision Science, UNSW Sydney presented on the “Recent updates in dry eye: what patients need to know, treatment options and latest research”. With at least one in four Australians having dry eye disease, the cost of treatment is considerable. Prof Stapleton discussed risk factors that are modifiable (e.g., computer use, contact lens wear, environment) and non-modifiable (e.g., aging, female sex, Asian race), and presented a summary of available treatment options, including basic clinical therapies, office therapies, environmental modifications, and diet/lifestyle modifications. Prof Stapleton spoke on the value of registry data in tracking treatment outcomes over the long term. New research collaborations informed by patient experience, such as the Save Sight Dry Eye Registry, will provide best evidence and recommendations for dry eye disease diagnosis and management.
Dr Himal Kandel, the Kornhauser Research Fellow at the Save Sight Institute, The University of Sydney, highlighted how the Save Sight Dry Eye Registry was able to facilitate the real time use of patient reported outcome data. He discussed the advantages of using patient-reported outcome data in routine clinical practice while managing dry eye patients. These data minimise the disparity between clinicians and patients’ perspective and enhance shared decision making by raising the patients’ voice. How this works is that patients complete questionnaires on their quality of life and these data are stored in the registry. Such patient reported outcome data, Dr Kandel explained, engage patients and enable clinicians and researchers to determine the benefits of treatments to patients and find ways to improve outcomes.
clinicians using the registry can benchmark their practice against other clinicians in the registry to enable improvements in care for the benefit of patients
Dr Ngozi Chidi-Egboka, Research Associate at the Save Sight Institute, presented on the “Benefits of the dry eye registry from the patient perspective”. Dr Chidi-Egboka highlighted how the Save Sight Dry Eye Registry would improve understanding of the natural history of dry eye disease. Patients would benefit by having data from their dry eye disease stored overtime so that the course of their disease can be understood, and outcomes of treatment evaluated (Figure 2). Further, clinicians using the registry can benchmark their practice against other clinicians in the registry to enable improvements in care for the benefit of patients.
Ms Narina Janian, Advancement Portfolio Officer at the University of Sydney, highlighted the lack of funding available to eye researchers in Australia and the impact on their careers. Ms Janian discussed how research support from the patients and the community can have an important role in supporting dry eye disease research funding.
Feedback from DryEyeClub 2023 attendees was very positive. More than 70% of the attendees said the webinar was extremely worthwhile, easy to follow and engaging. About 57% of attendees reported gaining new knowledge about dry eye disease and were extremely likely to attend future webinars. The attendees felt clear answers were given to their questions and would like to hear more of future research focused on types of dry eye disease. Specific question was asked on how the attendees can be involved as clinical research participants.
The recording of the inaugural DryEyeClub: Seeing Outcomes webinar is available here.
Clinicians can use the registry without cost to monitor their practice outcomes. Find out more, and join the registry here.