Hydroxychloroquine-related Retinal Toxicity Risk with Dr. Narsis Daftarian
Arthritis Research Canada is home to over 40 research trainees. These trainees conduct research under the mentorship of leading experts in a variety of disciplines – from rheumatology to physiotherapy, pharmacy, health economics and more.
We are profiling these amazing, up-and-coming arthritis scientists and the projects they lead. Dr. Narsis Daftarian is up next. She’s an ophthalmologist currently completing a PhD in experimental medicine at the University of British Columbia.
Narsis, tell us about your background.
I am an ophthalmologist from Iran. I came to Canada in 2020 and began my master’s program in Experimental Medicine at the University of British Columbia in September 2021. In 2022, I transferred to the PhD program and advanced to candidacy in 2024.
How did you get involved in arthritis research?
It was a difficult decision to leave my ophthalmology practice in Iran. So, when I arrived in Canada unable to practice medicine, I decided to email the Department of Ophthalmology at the University of British Columbia to inquire about research opportunities. This is when I was introduced to Arthritis Research Canada Senior Scientist, Dr. Antonio Aviña-Zubieta. At the time, he was launching a study on hydroxychloroquine-related retinal toxicity, a rare side effect of hydroxychloroquine (Plaquenil), which is a medication commonly used to treat inflammatory arthritis and to prevent lupus flares.
What is your current research focus? What are you working on?
For my PhD thesis, I am involved in Arthritis Research Canada’s INTACT study that is a five-year cohort study following patients in British Columbia with rheumatoid arthritis or lupus who have used hydroxychloroquine for five or more years, to assess the risk of retinal toxicity.
Retinal toxicity is a rare side effect of hydroxychloroquine use but can cause irreversible vision loss. We want to better understand the risk.
To facilitate this work, we have developed a secure, cloud-based image bank that connects participating ophthalmology clinics to a centralized review platform. These clinics can upload anonymized retinal images, which are then reviewed to assess the presence and severity of retinal toxicity.
What do you hope this research achieves?
First, we want to understand the true risk or event rate of this side effect. Second, we hope to identify factors that increase the likelihood of developing it. This information will help clinicians tailor decisions based on individual risk—for example, how frequently patients should be referred to an ophthalmologist for screening. We also hope ophthalmologists will be able to understand the risk factors and pay more attention to specific patients. If they see changes, they can inform rheumatologists to make medication adjustments to reduce risk.
Third, we hope this research will inform guidelines. While recent retrospective studies have reported a high risk of Hydroxychloroquine-related retinal toxicity after 20 years of use, these findings may be unreliable due to significant missing data and diagnostic misclassification. As a result, some patients may have discontinued their medication unnecessarily out of fear. In our study, we use advanced imaging technology—macular Optical Coherence Tomography (OCT)—to screen the retina, the light-sensitive tissue at the back of the eye. This allows for early detection of toxicity and helps us better understand its progression, stability or even improvement following drug discontinuation.
What do you hope this research achieves?
When I arrived in Canada and discovered that arthritis research directly involves patients, I was very intrigued. I feel that it is extremely important to involve patients because they can open our eyes to the reality of what it is like to live with a specific disease every day. We don’t need to waste our time conducting complicated analysis that doesn’t work in the real world or fails to address challenges that people with arthritis face every day.
What does it mean to you to be part of Arthritis Research Canada?
As an ophthalmologist and researcher, I enjoy being part of a community of experts with different backgrounds. Having access to this expertise only improves the end results of our research.
What does it mean to you to be part of Arthritis Research Canada?
In my practice in Iran, I performed over 10 surgeries each week. I lost that part of my professional life when I moved to Canada. I have a strong passion for research, and my ideal path would be to work as a clinician-scientist provided I obtain my medical license in Canada. If that’s not possible, I hope to continue pursuing research as a university faculty member. Either way, I remain committed to a future in research.
