At the Association for Research in Vision and Ophthalmology meeting, several scientists presented research that we found interesting. One young scientist we met was studying keratoconus from a university perched on the edge of the Black Forest.
Dr. Stefan Lang, MD, was born in Bavaria, and grew up in Ulm, Germany where he attended medical school. He completed his ophthalmology residency at the University of Freiburg last year and is now a staff ophthalmologist there – treating patients, conducting research, and teaching students.
Dr. Lang told us about the Freiburg Keratoconus Registry. The Albert-Ludwigs Eye Clinic at the University of Freiburg collected information from their computerized medical records from 2007 to today. They identified 1841 patients (3681 eyes) diagnosed with keratoconus. Establishing a clinical data warehouse has huge potential for clinical and retrospective studies.
Dr. Lang worked with the Eye Clinic chair, Dr. Thomas Reinhard and cornea specialist Dr. Daniel Boehringer to set up the database. Since diagnostic and treatment options for keratoconus are changing dramatically, they concluded that collecting information about their KC patients would give them more information about the outcomes of these new treatments like crosslinking. Rather than study results from large clinical trials, which may take years to set up, collect information, and then analyze data, Lang created a database to capture data in real time. Information from clinical visits, including best corrected visual acuity is entered into the registry at each patient visit, giving eye doctors insight into the natural course of kerataconus.
“The use of already available data, generated through routine examinations and follow-up might provide a new and more efficient approach to clinical research,” said Lang. “Using the Registry for cross sectional and longitudinal analyses will help to characterize risk factors for progression of KC.”
As health care systems everywhere computerize their medical records, capturing data like this will become more commonplace. Physicians will be able to run reports that will help them spot trends and outcomes, and help drive treatment decisions based on practical experience.