Dr Maria Cabrera-Aguas chats with Pauline Khoo, a Clinical Researcher at the University of Sydney, Save Sight Institute about the world’s first international dry eye registry
The dry eye registry records patient outcomes, generates benchmarking reports to improve your patients’ dry eye outcomes and generates anonymised reports comparing clinicians’ patient outcomes with those of your peers.
Interested in joining the registry?
You will be asked to complete a brief training session before being granted access to the registries
If you have any questions, comments, or suggestions please send them to [email protected]
The Transcript is available in the 'Transcript' tab on this page.
Don't forget to listen to our previous episodes -->
Ep7: The link between dry eye and breast cancer treatment
Ep6: Quality-of-life questionnaire in keratoconus
Ep5: A glimpse on a new technology for corneal surgery
Ep4: Eye injury registry
Ep3: Herpes Simplex Keratitis
Ep2: Antimicrobial resistance in corneal infections
Ep1: Corneal infection and contact lenses
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Maria Cabrera (MC): Have you heard about clinical registries?
Did you know that clinical registries aim to collect data from patients to determine long term effectiveness and safety of treatments?
By the end of this podcast, you’ll know…
· How a Dry Eye Registry was developed at the University of Sydney, Save Sight Institute
· The purpose of the registry,
· How it works and
· How a clinician can request access to it.
In our last episode, I talked about what dry eye disease is, some risk factors to suffer from this condition, how to diagnose it and some initial treatments that an optometrist or ophthalmologist may recommend. I also interviewed a colleague from my research group, Pauline Khoo, about one of her projects on the association between dry eye and a medication prescribed for women with breast cancer.
In this episode, I invited Pauline again to talk about another project that she worked on, The Save Sight Dry Eye Registry which is the world’s first international, interdisciplinary dry eye registry and part of the Save Sight Registries. This project is led by Professor Stephanie Watson from The University of Sydney, Save Sight Institute and is supported by Novartis Pharmaceutical Corporation.
I am Maria Cabrera-Aguas. A Postdoc Researcher at the University of Sydney, Save Sight Institute. Welcome to the Sydney Eye podcast!
Before we kick off our episode today, I want to say that I am very grateful to you for the amazing engagement that we have had in the last month. We reached more than 700 downloads last week. Please, keep sharing this podcast with family, friends, and colleagues and don’t forget to rate this podcast in whatever podcast platform you use, or engage with us on Twitter or Instagram or send us an email to [email protected].
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Clinical registries are beginning to play significant roles in healthcare decision making as they are designed to collect real-world data over longer periods of time. They are becoming increasingly important to determine the long-term effectiveness and safety of treatments for dry eye.
The Save Sight Registries is one of the most advanced ophthalmic registries in the world, and is a unique platform for tracking eye disease, interventions and patient outcomes. Its sophisticated design delivers real-world evidence on the risks and benefits of current and new treatments for ocular conditions. This information helps clinicians provide safe, cost-effective and evidence-based solutions for vision impairment and avoidable blindness. The Save Sight Registries also promotes international scientific research aimed at developing strategies for reducing the incidence of blindness throughout the world.
The Save Sight Registries is an initiative of the Save Sight Institute, in collaboration with the University of Sydney and Sydney Eye Hospital.
Our guest today is Pauline Khoo, a Researcher at the Corneal Research Group at the University of Sydney, Save Sight Institute led by Prof Stephanie Watson who is a corneal specialist and head of the corneal unit at Sydney Eye Hospital.
MC: Welcome again Pauline and thank you so much for joining us in our show today.
Pauline Khoo (PK): Thank you for having me again.
MC: So today I would like to talk about another of your dry eye disease studies. So this study is the dry eye registry, which is part of the Save Sight Registries. Can you tell us more about this new registry?
PK: Yeah, of course. So I think I'm going to start with a little bit of background to why we developed the registry first. So, you know, clinical trials have been conducted to demonstrate the effectiveness of several therapies for dry eye, such as artificial tears or autologous serum eye drops. However, clinical trials are performed in highly controlled conditions and patients may not be representative of the general population. And it's because of this the effect dry eye treatments from a real-world setting is needed. Now observational studies may help better understand disease progression and unmet patient needs. So clinical registries such as Save Sight registries are currently being used as observational tools to evaluate specific outcomes in reward patients, as they are becoming increasingly important in post market surveillance for approved drugs and medical devices as well. So unfortunately, before the start of this project, there was no multinational, interdisciplinary, Web based dry eye registry available. And it's why we developed the Save Sight Dry Eye Registry.
MC: That's interesting. So when did you start this project?
PK: So the set-up of the project began at the beginning of 2020. And it required us putting together an international steering committee made up of international dry eye experts from around the world. And meticulous planning was involved in determining the data to collect and the clinical systems to perform as well as the dry eye questionnaires to be performed. And this was achieved by reviewing the available literature. So the tear film Ocular Surface Disease Dry eye Workshop and the Meibomian gland dysfunction workshop reports, as well as reviewing existing clinical registries. Um, we then held several meetings, um, with the steering committee members to obtain consensus across for what we would collect and what we wanted to look at. And the dry eye registry went through a significant number of testing from several of the steering committee members before being launched at the end of December, 2020.
MC: So it's already storing patients data then?
PK: Yeah. So the registries already collecting data from eight different countries around the world. Um, such as Australia, the United Kingdom, Spain, Germany, France.
MC: So Oh, wow. Okay, it went already internationally, so but who are the registry’s users?
PK: Um, So originally, the Save Sight Registries only collected, uh, was getting data from ophthalmologists, but, um, for the dry eye registry, ophthalmologists and optometrists can use the Save Sight Dry Eye Registry and this is because dry eye is not only seen by ophthalmologists but optometrists as well.
MC: Okay, so how many users do you have so far?
PK: To date, we have over 30 users from 22 sites from around the world are using the registry.
MC: Oh, wow. Okay, So how long does it take for the user to add the patient's data?
PK: Yes. So, um, the dry eye registry has a number of mandatory and non mandatory fields, and the mandatory fields are clinical assessments that can be performed by in all ophthalmology and optometry practises. While non mandatory fields may depend on the instruments that you may have available in your practice. So for example, not all clinics may have tear lab, which is an instrument that measures tear osmolarity. So for a baseline visit, which is the initial visit, the patient when they see the clinician, um, and follow up visits, which is every visit after it can be entered in under two minutes for mandatory fields and then for all fields. So that's non mandatory and mandatory fields. Um, it can be entered in around three minutes.
More on the dry eye registry up next…
But first, we have a question for you, the listeners. Do you have dry eye symptoms and have been treated? Email us at [email protected] or share on Twitter or Instagram with the hashtag sydeyepod, that’s Hashtag S-Y-D-E-Y-E-P-O-D.
MC: Okay, so the idea would be that they collect the data in every single patient’s visit?
PK: Yes, So for every visit you see the patient, you you enter the data in and the registry allows it so that it can track the changes that are occurring. So if you change treatments, if visual acuity changes, tear break up time, it's all going to track that for you.
MC: Can can the users download their own data or how does it work for the downloading?
PK: So, um, you can export data. Right now it's available for the other modules to drive. Because it's quite new, we're in the process of actually getting that through where you can export your data and also to run reports. Um, and the reports will allow you to compare your own data to other data to other clinicians around the world or in your own country. When you're comparing, though, the data is aggregated data. So it's not individual patients. It's just some of your your data versus another clinicians or those from around the world.
MC: Okay, sounds very interesting. So what would be the advantages of becoming a user of the registry? What would you tell the users out there?
PK: Yeah, So there's a number of advantages available specifically for those in Australia. If you're an ophthalmologist, uh, you can actually obtain CPD points from RANZCO, which is the Royal Australian New Zealand College of Ophthalmologists. And if you're an optometrist in Australia, you can actually like CPD points from Optometry Australia. Additional advantages would also include like I said, the report would allow you to see how you're comparing to other clinicians in your field, whether it’d be optometrists or ophthalmologists. Um, and in those also around the world, um, the the other thing as well is that for clinicians, when they enter data, the data actually belongs to them. And so if they decide at any point that they want to discontinue using the registry. They can actually withdraw the data from the registry at any time. So it's it's, I guess, safe to know, as a clinician that you have control over that data. And for those clinicians that who enter a significant number of patients into the registry, they will also be invited to be an author on any of the publications that we write for these for this registry.
MC: Okay. So far, have you published any any preliminary data or anything?
PK: Um, so we're in the process of collecting baseline data, uh, from what's currently been entered, and they have been written up as abstracts for conferences which will be presented at ESCRS, which is a European Society of Cataract Refractive Surgery as well as the Asia Pacific one of the Asia Pacific Conferences as well.
MC: Okay, um, so how how can the ophthalmologists and optometrists become users?
PK: Um, for those who are interested in using the registry, ethics approval is required. So especially for those who are in Australia or at least countries that are currently using the registry. Uh, ethics approval would be quite easy to obtain. For those countries that may not be using as of yet, we do have a Save Sight Registries team that can aid with applying for ethics applications and provide any information they are required to obtain approval.
MC: Okay. So just know, thank you for all the information that would be really useful for ophthalmologists and optometrists. So before I let you go, can you remind the listeners the best way to contact you?
PK: Yeah. So the best way to contact is either via Twitter, which is, um, @khootweets or by my email which is [email protected]
MC: Okay, Well, Pauline, thank you so much again for sharing this, another project with us today because I know you have, like, what, 4-5 different projects about dry eye disease. So probably we may come back with you in another episode.
PK: Thank you for having me.
MC: Bye Pauline Bye
To recap, The Save Sight Dry Eye Registry allows clinicians to anonymously enter information into the registry that relates to multiple aspects of dry eye management, including the treatment used, individual patient-reported outcomes and adverse reactions. This information will have positive outcomes for patients, clinicians, government health institutions and industry. Specifically in the case of dry eye, because usually once drugs are approved for treatment, there is usually no post-market surveillance.
If you are an optometrist or ophthalmologist and would like to become a user of the registry, you can request access at frbresearch.org, or email me to [email protected]
If you are a patient with a diagnosis of dry eye disease, please recommend this registry to your optometrist or ophthalmologist. Having data from more patients which provide more evidence to clinicians about the different dry eye treatments and its effectiveness in real-world patients.
I am Maria Cabrera-Aguas, thanks for listening to the Sydney Eye Podcast. If you haven’t yet subscribed to this podcast you are invited to do so, to receive a notification when a new episode is released. Please, keep sharing this podcast with family, friends, and colleagues.
If you have any questions, comments or suggestions please send them to [email protected] and connect with us on Twitter @CabreraMarie, it’s C-A-B-R-E-R-A-M-A-R-I-E or @cornealresearch using the hashtag S-Y-D-E-Y-E-P-O-D or on Instagram at drmariacabrera.
Will see you next time. Have a good one! Bye