Kicking off Stanford’s SIGHT Glaucoma Registry
Stanford Ophthalmology is leading a pacesetting effort to uncover new glaucoma biomarkers, a key challenge to discovering new breakthroughs in fighting the blinding disease. Stanford Insights from Glaucoma Health Tracking (SIGHT) is the ophthalmology department’s first comprehensive disease database combining all electronic record data, imaging results, and selected surgical patient biologic samples, including aqueous and blood. The department is also the first in the nation to setup a data warehouse linking additional at-home data. This includes virtual reality visual fields and home eye pressure checks, which are two important monitoring endpoints for glaucoma. SIGHT’s team of data scientists and clinicians will harness this real-world clinical information to train new algorithms such as predicting glaucoma surgical outcomes and identifying risk factors for glaucoma progression.
Through the generous gift support of a major donor, Robert Chang, MD, associate professor of ophthalmology, teamed up with Sophia Wang, MD, assistant professor of ophthalmology, to combine lab members to overcome the challenge of garnering enough funding to organize institutional-level records into a useful and comprehensive training set for predictive algorithms. Pilot data results are typically required for grant funding, often necessitating manual chart review which is nearly impossible for the tens of thousands of patients who have been treated at the Byers Eye Institute at Stanford. Existing glaucoma claims databases and registries have not yet combined medical records, imaging, and biologic samples, as well as home monitoring data, all into a single secure cloud storage site.
The American Academy of Ophthalmology Intelligent Research In Sight (IRIS®) Registry, and the University of Michigan SOURCE Glaucoma Registry (EPIC), each share electronic record data among multiple institutions. However, Stanford’s distinct SIGHT registry will be a uniquely information-rich dataset consisting of nearly 30,000 glaucoma patients, including a subset with highly curated, longitudinal glaucoma results. This will help identify new associated biomarkers for glaucoma diagnosis and treatment predictions.
Organizing real-world medical data for this sort of analysis is not a trivial task. There are lots of issues to address including poor standardization, lack of consensus, multiple biases, input errors, variable definitions, and practice pattern changes over time.
Glaucoma is a chronic eye condition where elevated eye pressure causes irreversible progressive damage to the optic nerve. While the disease tends to progress slowly, it is often asymptomatic in its early stages and thus biomarkers are paramount for earlier identification and to customize treatments to minimize later irreversible vision loss.
“Organizing real-world medical data for this sort of analysis is not a trivial task,” Chang said. “There are lots of issues to address including poor standardization, lack of consensus, multiple biases, input errors, variable definitions, and practice pattern changes over time.”
Chang and Wang’s teams are working together on different aspects of algorithm development to sift through big data in a more productive fashion. They are also solving technological hurdles related to data extraction, formatting, interoperability, encryption, and patient privacy preservation.
Currently, the team is devoting time to organizing the various inputs such as vision, refraction, intraocular pressure, medication and surgical history, fundus photos, visual fields, and optical coherence tomography scans pre- and post-treatments. The additional key home-monitoring component is being spearheaded by Ann Shue, MD, clinical assistant professor of ophthalmology, with initial pilot results from virtual reality visual fields and home tonometry data presented at the annual Association for Research in Vision and Ophthalmology (ARVO) meeting.
Five new hires are dedicated to the SIGHT registry. Anisa Chaudhry is an assistant clinical research coordinator in Chang’s Lab. She joined the department after graduating from University of California, Berkeley with a bachelor’s degree in psychology. Chaudhry is working on an in-clinic study using a virtual reality visual field to mimic the Humphrey visual field exam, with a potential to serve as an alternative to the regular visual field.
Marina Cannon is a clinical research coordinator associate in Chang’s Lab and an instrumental part of the larger, industry and grant supported multispecialty biorepository and proteomics division, overseen by Vinit Mahajan, MD, PhD, associate professor of ophthalmology. Cannon joins the department after completing her undergraduate degree in microbiology at the University of Vermont.
Archana Bhat, MS, joined the Stanford Research Informatics Center as a research data analyst in April 2018. She holds an MS in computer software engineering from the International Technology University and worked previously in the IT industry as a data analyst. Archana works closely with Wang to organize the eye patients’ electronic health records backend database as well as to oversee Stanford's contribution to the IRIS registry and the SOURCE glaucoma registry.
Shiqi Tao, MSDS, and Victor Zhang, MSDS, joined the department recently as data scientists. Both received their master’s degree in data science from the University of San Francisco. They are specializing in natural language processing and computer vision techniques, which are applied to the cleaned data to derive new associations and predictions for glaucoma treatments and outcomes.
We are immensely grateful for the generosity of our philanthropic donor. Without their support this ambitious project would not have gotten off the ground. From the SIGHT glaucoma registry, we now can potentially unlock new insights from thousands of patient journeys, in order to provide a more custom, precision-medicine style diagnostic and therapeutic treatment approach to glaucoma care.
“We are immensely grateful for the generosity of our philanthropic donor. Without their support this ambitious project would not have gotten off the ground,” Chang said. “From the SIGHT glaucoma registry, we now can potentially unlock new insights from thousands of patient journeys, in order to provide a more custom, precision-medicine style diagnostic and therapeutic treatment approach to glaucoma care.”
To find out more about partnering with Stanford Ophthalmology in this and other sight-saving research to fight blinding eye diseases, contact Robert (Bob) Busch, senior associate director of development, at firstname.lastname@example.org or (650) 223-9121.