Online Tool Makes It Easier to Share and Analyze Data on Epilepsy-Related Cognitive Disorders

A new system for identifying and classifying cognitive disorders in patients with epilepsy is making it easier for researchers to collaborate and share data across institutions and globally. Now, a Cleveland Clinic-led team has developed a free online tool that investigators can use to quickly apply the framework.

The International Classification of Cognitive Disorders in Epilepsy, or IC-CoDE, provides a standardized approach to how cognitive function in people with epilepsy is categorized and communicated, regardless of the age of the patient, which neuropsychological tests and norms were used, or the language in which the patient was assessed. It enables researchers at epilepsy centers across the world to pool and share data, even if they use different approaches to evaluating patients.

“The goal is to spur international collaborative research efforts by creating a consortium where we can pull together data from different centers around the world,” says Robyn Busch, PhD, staff neuropsychologist in Cleveland Clinic’s Epilepsy Center. “If we can combine data that we couldn’t combine before, we can conduct larger-scale studies and really push research forward to better understand cognition in epilepsy.”

IC-CoDE: Useful but laborious

Epilepsy can affect many different areas of cognition, including memory, executive function, language, visuospatial skills, attention and processing speed. Within each of these domains, multiple tests and assessment tools can be used to evaluate patients. There are also different approaches to determining the “healthy” measurements used as a normative comparator. The result has been a mishmash of datasets that resisted consolidation. “It wasn’t apples to apples,” Dr. Busch observes.

In 2020, the International League Against Epilepsy Neuropsychology Task Force partnered with the International Neuropsychological Society to develop the IC-CoDE. The goal was to create a system that could consistently classify patients into comparable groups and subgroups, regardless of which test or battery had been used to assess them.

While the framework proved useful for classifying individual patients, applying it to larger datasets was laborious and time-intensive.

Enter the free portal

That challenge prompted Dr. Busch and her colleagues to create an interactive, open-source web platform called the IC-CoDE Portal (https://ic-code-portal.ccf.org/) to make the process easier.

“We developed an online calculator that does the calculations for you and generates cognitive phenotypes for an individual or a series of patients,” she explains. She and her colleagues introduced the portal in a recent paper in Epilepsia that describes the portal’s development, implementation and validation, along with instructions for use.

The portal’s development was funded with a grant from the American Epilepsy Society, which also supported the development of a new multicenter database on epilepsy-related cognitive disorders, Dr. Busch notes.

She says that IC-CoDE has generated “significant interest” among researchers and is already being used in a number of epilepsy studies around the world. She and her collaborators are also continuing to test and improve the IC-CoDE methodology by running large datasets through the portal to determine the best criteria to use for consistent results.

Research for now, but clinical applications possible

While the portal is currently intended for research, Dr. Busch hopes it may one day be used in clinical settings as well, such as to help determine which therapy may be most effective for an individual patient’s cognitive subtype or to predict which patients would have the best outcomes from surgery.

“The ultimate goal is to better understand the factors that underlie various cognitive phenotypes in epilepsy in order to inform treatments for cognitive dysfunction or, ideally, to prevent it from happening in the first place,” she says. “Hopefully, stratification methods, like IC-CoDE, can help lead us into a more precision medicine type of approach to care.”