Big Data: The IRIS® Registry for Ocular Oncology

As the largest clinical registry in the United States, The Intelligent Research In Sight (IRIS®) Registry is a large electronic health record-based database designed to collect data on diagnosis, treatments, and outcomes of ophthalmic diseases. The Registry’s automated data-pull strategy and inclusion of administrative and clinical information have enabled it to successfully answer questions in many areas of ophthalmology. However, the IRIS Registry has not been evaluated for use in ocular oncology. Current and future opportunities for researchers using the IRIS Registry include analysis of visual acuity and comorbidities, geographic patient tracking using unique identifiers, and study of treatment toxicity. A significant limitation of the Registry currently is the lack of important data elements unique to oncology, such as tumor dimensions, biopsy results, and information related to non-ophthalmic outcomes such as disease progression and death. Potential strategies to overcome this barrier may include developing minimum data sets for ocular cancers and incorporating standardized discrete data elements into electronic health records. While there are existing hurdles for implementation of the IRIS Registry for study of ophthalmic cancers, there is also significant promise. In the future, leveraging the IRIS Registry to perform big data analyses for ophthalmic cancers has significant potential to improve our understanding of the rare diseases we treat and ultimately lead to improved care for our patients.