BLOG: Real-world analyses of IRIS Registry data focus on GA, DME
Key takeaways:
- Improved tools are needed to collect real-world patient-reported outcomes in geographic atrophy.
- More data will help improve understanding of real-world treatment patterns and patient responses to therapy.
The IRIS Registry, managed and curated by Verana Health’s VeraQ population health data engine, offers researchers and clinicians the opportunity to gather insights on real-world practice patterns, clinical outcomes and more.
We presented two studies demonstrating the breadth and depth of analyzing curated IRIS Registry data at the American Society of Retina Specialists 2022 annual meeting.
Real-world functional outcomes of patients with GA
Borkar and colleagues performed a retrospective cohort analysis of the IRIS Registry to determine which vision-related quality of life measures and patient-reported outcomes could be quantified among patients with geographic atrophy (GA). To do this, researchers examined the notes fields (ie, text entry fields in which qualitative data are entered during an examination) of two cohorts: those with newly diagnosed GA and those with GA who had at least 3 years of follow-up. Each cohort had approximately 100 patients.
Researchers searched patient notes for a handful of terms related to daily function, mental health and mobility. Some terms appeared with a high degree of frequency, such as the term “reading,” which appeared in 12% and 11% of patient notes, respectively, for the new GA and 3-year GA groups. Other terms included “limited” (11% and 15%, respectively) and “depression” (7% and 5%, respectively), although all appeared infrequently.
Occasionally, a word appears in patient notes but does not actually describe a patient’s condition (eg, “Patient has a family history of depression”). In order to address this possibility, the research team manually verified that any flagged words were, in fact, describing the patient’s quality of life relative to their GA diagnosis. When flagged terms matched actual patient conditions, the frequency for some terms was reduced even further.
This research highlights the need to develop improved tools to collect real-world patient-reported outcomes in GA, as such tools may be useful in a research landscape that increasingly values them. Readers who want a deeper dive into the particulars of the study can read the published results here.
DME real-world treatment patterns
Leng and colleagues conducted a retrospective analysis among treatment-naive patients in the United States with diabetic macular edema and up to 6 years of follow-up. The researchers relied on the deidentified patient records from the IRIS Registry to analyze anti-VEGF treatment patterns in this population. Due to the curated nature of the IRIS Registry, approximately 190,000 patients who fit the study’s enrollment criteria were easily identified among nearly 2 million patients with DME.
Among the team’s major findings were the following:
- A large majority (77%) of eyes with DME received only one type of anti-VEGF agent during a mean 2.3 years of follow-up.
- Avastin (bevacizumab, Genentech) was the most commonly used agent, with 53% of patients receiving the off-label injection. Use of bevacizumab decreased by a mean 5.6% annually over the 6-year follow-up period, and use of on-label agents increased by a mean 6.9% annually in the same time frame.
- Approximately 15% of eyes were switched to a different anti-VEGF agent after a mean of 53 weeks, with 74% of eyes switching from bevacizumab to an on-label agent.
- Approximately 33% discontinued anti-VEGF therapy in any given year.
- Rates of anti-VEGF discontinuation, switching to a new agent and reinitiating anti-VEGF therapy after a stoppage were similar among patients regardless of their baseline visual acuity.
Armed with these data on real-world practice patterns, we may better identify areas for improvement in our treatment paradigms. Additionally, these data may be used as a starting point to further explore reasons for anti-VEGF switching or treatment discontinuation. If you’d like to learn more about this study, refer to the published results here.
A look ahead
As more clinicians contribute to the IRIS Registry and more researchers explore its data, we can enhance our understanding of real-world treatment patterns and patient responses to therapy — and the more we know about real-world behavior, the better we can tailor treatments to meet patients’ needs.
References:
- Borkar D, et al. Characterizing real-world functional outcomes in patients with geographic atrophy: An IRIS Registry analysis. Presented at: American Society of Retina Specialists annual meeting; July 15, 2022; New York.
- Leng T, et al. Long-term real-world treatment patterns among patients with diabetic macular edema initiating anti-VEGF: 6-year follow-up using the IRIS Registry. Presented at: American Society of Retina Specialists annual meeting; July 15, 2022; New York.
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