Laura K. Wiley, PhD
Electronic health records (EHRs) are used for many purposes from recording your healthcare status to tracking and billing the healthcare services you receive. What’s not on that list is performing research! I am a biomedical informatician – my job is to build new methods that allow us to use data from your EHR for research. Here at the Colorado Center for Personalized Medicine, there are a number of informaticians that partner with researchers and clinicians to answer important questions about health and biology.
One of these clinical collaborations is with Dr. Christopher Roark in the Department of Neurosurgery. Dr. Roark treats patients with brain aneurysms – small weak spots in a blood vessel in the brain. There are nearly 6.5 million people in the United States with a brain aneurysm and most people do not know they even have one. Unfortunately, aneurysms can rupture causing bleeding in the brain. Aneurysm ruptures are fatal in about 50% of cases, and leave 66% of those who survive with some form of permanent neurological issue. In the past, we only saw aneurysms after they had ruptured, but now as we use advanced imaging technologies more frequently (say after a car wreck or fall) we are finding more and more unruptured aneurysms. The vast majority of brain aneurysms will never rupture, but those that do can be devastating. There are effective treatments for brain aneurysms such as surgery, but this comes with its own set of risks. Unfortunately, we do not have good ways of identifying which aneurysms are most likely to rupture.
To help identify which patients have the highest risk of rupture, and who will get the most benefit from preventive surgery – Dr. Roark and I have created the Aneurysm Research Repository. Similar to the CCPM Biobank – this is a collection of EHR data that includes all patients we have seen at UCHealth with a brain aneurysm. With this data, we can see what factors are associated with aneurysm rupture. We’re still in the early stages of this research, but we are hopeful that this work will lead to better information to help guide patients and clinicians in making difficult choices in treating unruptured brain aneurysms.
If you are interested in learning more about brain aneurysms please visit the Brain Aneurysm Foundation (www.bafound.org).