Christine Conelea, Ph.D., and Suma Jacob, M.D., Ph.D., are frustrated. Frustrated that so much about childhood and adolescent neurodevelopmental disorders remains a mystery. Frustrated that too many kids with these disorders are unable to get the care they need. And frustrated that they themselves cannot do more to help.

Neurodevelopmental disorders comprise separate but often overlapping diagnoses: autism spectrum disorders, attention deficit/hyperactivity disorder, obsessive compulsive disorder (OCD), and tic disorders. More often than not, children have more than one of these four diagnoses, but treatments typically target only one disorder at a time. 

The reason why is threefold, Conelea says. Scientists simply don’t know enough about the underlying causes of these disorders. Clinicians are trained to treat one diagnosis at a time. And treatment options, some of which have only a 50-50 chance of working, are limited. The result is a whack-a-mole approach to care that, at best, gives kids an incomplete solution to their challenges, and, at worst, leaves them with no solution at all, Conelea says.

“We’re always thinking about the kids we aren’t able to help clinically,” she says. “The ones that have combinations of those disorders. These kids have been neglected by research that tends to focus on developing a single treatment for OCD or autism, for example. We want to know: What are the factors that contribute to those overlapping diagnoses?”

Conelea and Jacob (pictured above, left and right, respectively) have turned their shared frustration into a unique research collaboration at the University of Minnesota’s Masonic Institute for the Developing Brain (MIDB), known as the Converging Approaches to Neurodevelopment, or CAN, Lab.

Conelea, a clinical psychologist, and Jacob, a psychiatrist and neuroscientist, along with their team of investigators, are working to better understand what causes neurodevelopmental disorders while at the same time developing new treatments to help kids who previously have been left behind. 

Their goal is to create a new paradigm, one that embraces the interconnectedness of neurodevelopmental disorders, encourages cooperation among experts, and ultimately leads to better care for more kids.

“We want the research to match what’s happening in the real world,” Jacob says. “And we want to be able to tailor treatment to kids who have more than one of these diagnoses.”

Knowledge is power

That mission starts by painting a fuller picture of why neurodevelopmental disorders occur in the first place, Jacob says. Scientists know that family genetics and life experiences contribute to these disorders, but how they take shape—and why some children respond to treatment while others don’t—isn’t clear.

Research at the CAN Lab is out to change that. Jacob is part of the largest national autism study, one that aims to uncover the genetic underpinnings of the disease by collecting DNA samples from more than 50,000 families. She is also part of international clinical trials using novel interventions to follow brain-based biomarkers across all ages. And at the same time, she’s collaborating with U of M neuroscientists to measure how individuals with autism think and make decisions, and how that information could lead to better, more targeted treatments.

Conelea, meanwhile, is pursu-ing new ways to help adolescents diagnosed with tic disorders, like Tourette syndrome. The first-line treatment for a tic disorder is a nonmedicated, behavioral modification approach to managing tics. Some patients respond; about 50-60% do not.

For the latter group, Conelea and her team have launched a first-of-its-kind clinical trial exploring whether a combination of behavioral therapy and transcranial magnetic stimulation—a painless, noninvasive procedure that activates brain cells—can elicit a better response.

The research capitalizes on the U’s world-renowned brain imaging capabilities and neuromodulation expertise available at the MIDB. But more than that, Conelea says, it’s an example of the CAN Lab’s patient-centered approach to pursuing knowledge.

“The questions we set out to answer are driven by the families and children sitting right in front of us,” she says.

That line of thinking embodies the ethos of the MIDB as a whole. When it opened in 2021, the MIDB became the first facility of its kind to unite researchers and clinicians focused on childhood and brain health under one roof. The idea is that breakthroughs in the lab can inspire better care for patients, while challenges in the clinic can fuel meaningful research endeavors. 

Jacob and Conelea, who are both clinician-researchers, are bringing that idea to life.

“We joke that we don’t have a separate ‘researcher hat’ and a ‘clinician hat,’” Jacob says. “We have one hat that we wear all the time that keeps us thinking in both directions. What we see in the clinic motivates so much of what we do scientifically.”

What the future holds

Another element that makes neurodevelopmental disorders particularly hard to understand and even harder to treat is that children’s brains are always changing. Sometimes the brain is more susceptible to change and intervention, which makes timing a critical aspect of care.

“These disorders manifest in different ways at various phases in development,” Jacob explains. “So we’re thinking about how a disorder looks at age 2, 4, or 8 versus age 14, and how those differences change the way we need to engage with and care for individuals over time.”

It’s another way that Conelea, Jacob, and their colleagues are taking a holistic approach to neurodevelopmental disorders. Combining a deep understanding of why neurodevelopmental disorders occur, what treatments work, and how each individual’s unique life experiences impact their diagnoses could yield a future of truly individualized care, Conelea says.

“We dream of a future,” she says, “where, for each child we see, we can measure their profile, match them to a treatment that’s likely to be effective for them, and help them have the best response possible.”