BLOG: IRIS Registry helps fill in gaps in data sets
Click Here to Manage Email Alerts
In 2021, we shared data on real-world quantifiable and qualifiable geographic atrophy patient patterns.
Among our findings were that lost to follow-up status among patients with geographic atrophy (GA) positively correlated with advanced age, baseline best corrected visual acuity worse than 20/40, further distance from a provider, male gender, and having Medicaid or no health insurance.
Given the unique inclusion criteria designed to examine long-term follow-up behavior in a real-world patient population, our team turned to the American Academy of Ophthalmology IRIS (Intelligent Research in Sight) Registry. The IRIS Registry possesses the unique ability to capture data from patients with GA who, due to the unique characteristics of their disease, may be otherwise unaccounted for in other databases. This ensured that we were able to close data gaps and capture a long-term view of real-world dynamics for patients with GA.
Groups seeking to explore real-world dynamics of a particular condition often turn to private insurance claims databases, as they offer a convenient method to examine large populations of real-world patients. However, for our study, we were interested in patients with GA, a population that is primarily enrolled in Medicare. Therefore, a private claims database would yield limited, if any, useful data.
Use of Medicare claims data could indeed provide significant information about health care utilization, including visit frequency and ancillary test utilization, which are relevant for understanding the patient journey for patients with GA. However, other detailed clinical characteristics, such as visual acuity, are not captured in claims data. The use of the IRIS Registry could allow for a thorough analysis of patients with GA and disease characteristics, including clinical features, associated with becoming lost to follow-up.
Given that our research required a curated database, a high volume of complete patient records and a national scope, we turned to the IRIS Registry. At the time of our study, the IRIS Registry housed data from more than 12,000 ophthalmologists and 60 million unique patients. This curated database allowed our team to quickly eliminate incomplete patient records and patient profiles that did not otherwise fit our inclusion criteria, empowering us to spend less time on tedious data-refining processes and more energy on analysis of reliable information.
We were confident in the quality of the data pulled from the IRIS Registry because the AAO data curation and analytics partner, Verana Health, has expertly curated the database with its VeraQ population health data engine. In addition to crafting a filtering framework that allows for rapid inclusion and exclusion of data, Verana Health has assisted the AAO in tokenizing patient identifiers. This process ensures that patients who see separate providers for the same condition — say, a snowbird who sees a retina specialist in Phoenix during the fall and winter but a different provider in St. Louis during the spring and summer — are not duplicated in the IRIS Registry while still keeping their data de-identified. Tokenization ensures that the database used in our research is accurate and reliable.
Retina specialists seeking to understand real-world patient dynamics in other disease states may wish to turn to the IRIS Registry to conduct their research, as it offers the most organized and filterable nationwide data in ophthalmology. The IRIS Registry fills in the gaps that other databases leave open, creating a reliable and robust data set ready for analysis. In the case of our research, knowing that we were able to include patients with GA who would otherwise be unaccounted for in a CMS or private insurance database meant having confidence that the conclusions we drew accurately reflected reality.
Reference:
Borkar D, et al. Clinical and demographic factors associated with loss to follow-up in patients with geographic atrophy secondary to age-related macular degeneration in the IRIS Registry. Presented at: American Society of Retina Specialists annual meeting; Oct. 8-12, 2021; Austin, Texas.
Collapse