Focusing Big Data into Cures: The University of Illinois NeuroRepository

‘Doctor, how long do I have to take this medicine? I really don’t like the way I feel on it’ is a common question asked by recently diagnosed patients with epilepsy, notes Dr. Jeffrey Loeb, Head of the Department of Neurology and Rehabilitation at the University of Illinois in Chicago. While medicines that treat epileptic disorders do not cure seizures. While they can reduce the risk of seizures, they have many side effects and are often required for life. Other brain disorders, including neurodegenerative diseases such as Alzheimer’s and ALS also have no cures and current medications produce minor symptomatic relief at best. “Telling a patient he or she has an incurable brain tumor is nothing short of devastating,” says Dr. Loeb, “both for the patient and their family….we need to do better.”

Well now we have more than just hope. Dr. Loeb and a team of physicians, scientists, computer scientists, and engineers have just completed construction of University of Illinois NeuroRepository (UINR):A one-of-a-kind human tissue and data repository focused on turning big data into cures. “There is no better way to understand and develop treatments for human brain and neurological disorders than from those who are most affected…our patients,” says Dr. Loeb. ‘Big Data’ is a popular term use nowadays to reflect extremely large datasets that include thousands of genes, proteins, and molecules. The UINR is the first to dramatically enhance the utility of these big data sets generated from human brain tissues with clinical, radiological, electrical, and histological data within a given patient for a given condition.

For example, patients with severe forms of epilepsy who do not respond to medications can often benefit from brain surgeries that involve long-term intracranial electrical recordings to remove large portions of the brain that cause seizures. “By the time these abnormal tissues are removed, we know more about them than from any animal model or any other human brain disorder,” notes Dr. Loeb. By precisely co-registering each piece of tissue removed with the electrical activities recorded from that tissue prior to its removal, the UINR team as used novel computational methods to understand what makes these abnormal brain regions epileptic leading to important clues for a cure. The group has discovered highly consistent patterns of genes linked to specific epileptic activities, localized these genes to specific layers of neurons in the brain, and identified a drug that can prevent these genes from causing epilepsy in animal models.

Teaming up with Dr. Qin Li Jiang, director of the University of Illinois ALS clinic, the UINR is also collecting postmortem tissues from patients with ALS as a means to develop big datasets on how the disease spreads through the nervous system. ALS is a tragic disease of neuromuscular weakness that often starts locally and eventually spreads leading to respiratory compromise and death. Patients who know that they will eventually succumb to ALS have signed up for a rapid autopsy protocol to collect their tissues within 3 hours of their death. “When a patient gives their all to try to help others afflicted with ALS, we have an enormous obligation to maximize everything we do to get the most out of the tissues they donate,” notes Dr. Loeb. ALS is a very different disease than epilepsy involving different parts of the nervous system. Therefore, tissues need to be sampled from regions of the brain, spinal cord, nerves and muscles in an intricate, time-consuming procedure undertaken by a dedicated team, that can occur at all hours of the day or night.

A similar project underway with Dr. Martin ‘Kelly’ Nicholas, head of the brain tumor center at the University of Illinois in Chicago, takes an equally complex, brain-tumor specific approach to combat this life-altering disorder. “A unique aspect of the NeuroRepository is that it takes for each disorder we have to customize how we collect, process, and link each piece of tissue to the clinical story of each of our patients in order to generate a comprehensive approach to understand and develop treatments for brain diseases,” says Dr. Nicholas, who also serves on the UINR leadership team. This is what gives the UINR the power to understand and develop treatments for each disorder studied in ways not previously possible.

Equally important to generating big data, an advanced team of computer scientists, engineers, and geneticists within the UNIR and from around the globe collaborate to mine the data the unique and multifaceted data. As a means to support and expand these collaborative efforts the Department of Neurology and Rehabilitation within the historic Neuropsychiatric Institute in the Chicago Medical District have completed the construction of a state-of-the-art interactive space for multidisciplinary interactions. On January 12, 2017 this space will be launched with a symposium that highlights the many facets of the UINR. For information on this and other upcoming events check out the UINR website at: neurology.medicine.uic.edu/uinr