The American Academy of Ophthalmology IRIS® Registry (Intelligent Research In Sight) represents a remarkable opportunity for knowledge discovery and collaborative studies. The world’s largest specialty clinical data registry, as of Sept. 1, 2020, the IRIS Registry has aggregated, de-identified data on over 349.37 million patient visits from 59.99 million unique patients, growing daily. Approximately 16,030 clinicians in ophthalmology practices have registered to electronically contribute their data to the IRIS Registry through their electronic health record systems.
How It Works
EHR data is stripped of all unique patient identifiers when it is uploaded into IRIS Registry for privacy purposes. Participating physicians own their own data. The Academy owns the de-identified, aggregated data and can analyze these data. The database has the same legal protections and safeguards from legal discoverability, as do hospital-based peer-review processes.
Ways to Use Our Data
The IRIS Registry’s database can help to inform the natural history of diseases, prevalence of rare diseases, practice patterns, diffusion of technology, comparative effectiveness and more, all in the real-world setting. Data elements include: patient demographics, patient medical and ocular history, clinical examination findings, diagnoses, procedures and medications.
As an example, the registry currently contains data on the following disease conditions:
- The rate of endophthalmitis after cataract surgery, the visual outcome of patients with endophthalmitis and specific risk factors associated with developing endophthalmitis
- The rate of endophthalmitis after anti-VEGF injections across different agents and the comparative effectiveness of these agents based on visual acuity outcomes
- The prevalence of myopic choroidal neovascularization in the United States, based on both diagnostic code information and clinical data
- The treatment patterns for patients with myopic choroidal neovascularization, including the visual acuity outcomes for those treated and those not treated
Current research opportunities
IRIS Registry Data Dictionary
The IRIS Registry database is comprised of data extracted from participants’ electronic health record systems. Review the registry’s data dictionary, which includes data variables accessible for analysis in the IRIS Registry.
IRIS Registry Publications
Sun MM, Kelly SP, Mylavarapu AL, Holland GN, Coleman AL, Yu F, Hsu S, Lum F, Gordon L. Ophthalmic immune-related adverse events following anti-CTLA-4 or PD-1 therapy recorded in the American Academy of Ophthalmology IRIS Registry. Ophthalmology, in press. Accessed Nov. 5, 2020.
Ho AC, Kleinman DM, Lum FC et al. Baseline visual acuity at wet AMD diagnosis predicts long-term vision outcomes: An analysis of the IRIS Registry. Ophthalmic Surg Lasers Imaging Retina 2020 Nov 51:633-639.
Chang TC, Parrish RK, Fujino D, Kelly SP, Vanner EA, Factors associated with favorable laser trabeculoplasty response: IRIS Registry Analysis, Am J Ophthalmol, in press.
Repka MX. Amblyopia Outcomes Through Clinical Trials and Practice Measurement: Room for Improvement: The LXXVII Edward Jackson Memorial Lecture. Am J Ophthalmol 2020 in press.
Rao P et al. Reoperation rates of patients undergoing primary noncomplex retinal detachment surgery in a cohort of the IRIS Registry. Am J Ophthalmol 2020 in press.
Lee CS, Owen JP, Yanagihara RT, Lorch A, Pershing S, Hyman L, Miller JW, Haller JA, Chiang MF, Lum F, Lee AY. Smoking is associated with higher IOP regardless of glaucoma, a retrospective study of 12.5 million patients using the IRIS Registry. Ophthalmology Glaucoma, in press. Accessed March 31, 2020.
Glasser DB, Parikh R, Lum F, Williams GA. Intravitreal Anti-Vascular Endothelial Growth Factor Cost Savings Achievable with Increased Bevacizumab Reimbursement and Utilization. Ophthalmology 2020; 127:1688-1692.
Rubino SM, Parke DW III, Lum F. Return to the Operating Room after Vitrectomy for Vitreous Opacities: IRIS® Registry Analysis. Ophthalmology Retina, in press. Accessed July 17, 2020.
Mahr MA, Lum F, Fujino D, Kelly SP, Erie JC. Return to the Operating Room for Removal of Retained Lens Fragments after Cataract Surgery: IRIS® Registry (Intelligent Research in Sight) Analysis. Ophthalmology 2020; 127:698-9.
Cantrell RA, Lum F, Chia Y, Morse LS, Rich WL, Salman CA, Willis JR. Treatment Patterns for Diabetic Macular Edema: An IRIS® Registry Analysis. Ophthalmology, in press. 2020;127:427-9.
Pershing S, Lum F, Hsu S, Kelly S, Chiang MF, Rich WL, Parke DW. Endophthalmitis after Cataract Surgery in the US, A Report from the IRIS Registry, 2013-2017. 2020; 127:151-8.
Strabismus, Strabismus Surgery and Reoperation Rate in the United States: Analysis from the IRIS Registry
Michael X. Repka, MD, et al.
Ophthalmology, Volume 125, Issue 10, 1646–1653 (October 2018)
Return to the Operating Room after Macular Surgery: IRIS Registry Analysis
D. Wilkin Parke III, MD, et al.
Ophthalmology, Volume 125, Issue 8, 1273–1278 (August, 2018)
The 2016 American Academy of Ophthalmology IRIS® Registry (Intelligent Research in Sight) Database: Characteristics and Methods
Michael F. Chiang, MD, et al
Ophthalmology, Volume 125, Issue 8, Pages 1143–1148 (August 2018)
The Real World Effect of Intravitreous Anti-VEGF Drugs on IOP: An Analysis Using the IRIS Registry
Elizabeth Atchison, MD, et al.
Ophthalmology, Volume 125, Issue 5, Pages 676–682 (May 2018)
Performance Rates Measured in the IRIS Registry
William L. Rich III, MD et al.
Ophthalmology, Volume 125, Issue 5, Pages 782–784 (May 2018)
Real World Vision in Age-Related Macular Degeneration Patients Treated with Bevacizumab, Ranibizumab or Aflibercept only Over One Year in a Cohort of the IRIS Registry
Prethy Rao, MD, et al
Ophthalmology, Volume 125, Issue 4, 522–528 (April 2018)
The American Academy of Ophthalmology’s IRIS Clinical Data Registry: A Look Back and a Look to the Future
David W. Parke II, MD, et al.
Ophthalmology Volume 124, Issue 11, 1572-1574 (November 2017)
Treatment Patterns for Myopic Choroidal Neovascularization in the United States
Jeffrey R. Willis, MD, et al.
Ophthalmology, Volume 124, Issue 7, 935 - 943 (July 2017)
The IRIS Registry: Purpose and Perspectives
David W. Parke II, MD, et al.
The Prevalence of Myopic Choroidal Neovascularization in the United States: Analysis of the IRIS Data Registry and NHANES
Jeffrey R. Willis MD et al.
Ophthalmology, Volume 123, Issue 8, 1771 - 1782 (August 2016)
How Big Data Informs Us About Cataract Surgery: The LXXII Edward Jackson Memorial Lecture
Anne Louise Coleman, MD
American Journal of Ophthalmology, Volume 160, Issue 6, 1091 - 1103.e3 (December 2015)