Alianna Perez has a picture of her brain on her bedroom door.
“Everybody has to come see it,” her mother, Eileen Perez, said. Every time a guest enters their home, 9-year-old Alianna takes them by the hand and leads them to the black and white scan because, “it’s just so cool.”
Earlier this year, she and her cousin, 10-year-old Sara Castro, spent almost seven hours in and out of an MRI machine at Florida International University getting their brains scanned. While doing it, they played memory games, answered questions and watched “Star Wars: The Force Awakens.”
They are part a national study unlike any other. It spans 19 universities, includes 11,500 kids and will follow them for a decade. The adolescent brain cognitive development study — ABCD, for short — is the largest, long-term evaluation of brain development and child health ever to be conducted in the United States.
“Everything is the most with this study,” joked Angela Laird, half of the Ph.D., duo who helped bring the multimillion-dollar National Institutes of Health-funded project to FIU in 2015.
The children in the study — all 9- and 10-year-olds — agreed to have their brains scanned every two years, to show up for a behavioral assessment in-person once a year and do a 30-minute assessment by phone every six months. In return, parents make $2,350 — and get a unique measure of childhood growth.
Part of the plan is to make sure the chosen kids are representative of the population of the U.S., which makes FIU an attractive participant. Miami-Dade County offers a more diverse group of children — by race, class, education level and ethnicity — than any other research site.
And FIU is still recruiting. The goal is 600 kids, but FIU is on track for close to 700, and the door doesn’t close until September of next year.
“We’re in that free zone where it’s like ‘come on in, come on in, come on in,’” said Laird, the director of FIU’s Center for Imaging Studies. “Then the sample is the sample and we’re locked in across the county.”
This massive trove of data will delve into a number of hot-button topics: screentime, concussions, alcohol and tobacco, ADHD medications, sports and mental illness.
Once they got the confirmation call from the NIH, Laird and the other primary investigator, Raul Gonzalez, knew they’d have to act fast. She said FIU “bent over backwards” to get a brand new, 13-ton MRI installed as fast as possible.
“I’ve never seen an imaging center put together from scratch at the speed this one was,” Laird said. “We did it on a timeline that was a third of what other people thought it would take.”
Scanning began the first week of November 2016, “and we’ve been going at light speed ever since,” she said.
What made this study “the talk of the town,” as Laird put it, was the sheer volume of data it will create. Dozens and dozens of top scientists in their fields worked for a year to come up with the questions and psychological tests — that all kids will take as a baseline assessment and annually.
“You want to get as much information as possible because this is the one shot,” Laird said. “We’re not doing this again. The U.S. is not funding this again.”
Every moment of a participant’s time is precious, Laird said, so the decision to add a single question can take hours of phone calls.
Any extra question or test could be the final straw for a bored or burned-out child, and holding on to more than 11,000 kids for a decade is no small feat. The study is completely voluntary, so it’s up to the researchers to make sure the families feel like it’s worth their time.
“We want them to feel like they’re part of this study, part of our family,” Gonzalez said. “We get to watch these kids grow up.”
In between all the games, movies and tests inside the MRI, there’s also a period of scanning where the kids do nothing. Part of Laird’s research as a cognitive neuroscientist focuses on the way the brain looks when it’s bored, or not trying to achieve any type of goal.
Brain scans of bored people show their “default mode network,” the underlying connections between different parts of the brain. These connections are how the brain communicates. The stronger the connections, the healthier the brain.
“That’s why people need down time,” Laird said. “People don’t need to go, go, go, go, go because we need to strengthen the connections of our default mode regions.”
When those connections weaken, Laird said, it can be a sign of incoming mental illness. Researchers know genetics shape brain health but they want to find out what else impacts neural connections, and what can be done to make them healthier.
Mental illness is a major underpinning of the study. The scientists specifically chose such young children because the 10-year window of the study focuses on the age range where most mental illnesses first show up.
Gonzalez, a clinical neuropsychologist, wants to study the connection between mental illnesses and substance abuse, which often start within the same age window. Kids will be asked about their drug use throughout the study so scientists can pinpoint the moment to watch for drug-related changes.
He hopes this study will help answer “the chicken and the egg problem” between the two disciplines: does drug abuse cause mental disorders? Or do mental disorders cause drug abuse?
All of this information is, of course, confidential, even from parents. But there are exceptions, like if the brain scan shows something a doctor might want to examine further. There’s been about seven cases of that so far, Gonzalez said, in which case the researchers hand over all the scans to the child’s doctor.
The other exception is if a child reports violent or suicidal thoughts. The scans only started in November, but the number of third-graders who’ve told researchers they’ve thought of hurting or killing themselves is stunning, Laird said.
“I had no idea it was so prevalent at this age,” she said. “We have to do better for these kids.”
Beyond physical and mental health questions, kids are also asked about discrimination — for their race, their weight, their ethnic background, and their sexual or gender identity. A few of the children in the national study identify as transgender.
A decade from now, when the last scan is done and the final behavioral questionnaire is complete, scientists plan to give away all their hard work — for free. The data will be publicly released and available to anyone who wants to analyze it.
“To me, that’s the new model for science,” Laird said. “That’s how you get the most out of your money. This is an expensive project.”
The study is projected to cost upwards of $300 million for the entire decade, according to the National Institute on Drug Abuse.
“The data is also going to be looked at in ways we can’t even imagine,” Gonzalez said. “There’s just an infinite studies we’ll be able to run just by delving into the data.”
The depth and breadth of the study is what makes it unique, he said. A major problem in scientific research is reproducing results. Most studies are narrowly focused and done on a small group of people. This type of research can answer specific questions, but it can’t speak to larger trends or factors.
With the data from the ABCD study, researchers could discover unknown connections they hadn’t even considered.
“We get this really holistic picture of how these variables come together to predict human behavior,” Gonzalez said. “We know human behavior is super complicated, so this is much more getting at what the real world looks like and feels like and how these things all come together to shape an individual.”