Chronic throat infections used to be reason enough for kids to undergo adenotonsillectomies and enjoy a week or so of ice cream therapy. Nowadays, surgeons are more likely to remove enlarged adenoids and tonsils to treat sleep apnea and other forms of sleep disordered breathing (SDB). Studies show that SDBs can result in learning and behavioral problems including ADHD. While many children often breathe easier and return to normal function after the procedure, some patients continue to experience significant cognitive difficulties.
It’s the latter group that intrigues researchers at the University of Michigan. Following children ages 5 up to 13 over time, investigators Bruno Giordani, PhD, and Elise Hodges, PhD, hope to reveal the subtle problems that may be affecting the mental processes in this patient population. To assess cognition they are using the recently released NIH Toolbox—a set of state-of-the-art tools developed by Northwestern University Feinberg School of Medicine’s Richard Gershon, PhD. The vice chair of research and the associate professor of medical social sciences led a six-year, NIH-funded study involving the collaboration of 235 scientists from nearly 80 academic institutions in the creation of the first common measurements for neurological and behavioral health. The NIH Toolbox was unveiled Sept. 10, 2012, to hundreds of researchers at a special National Institutes of Health conference. So far, interest has been high.
“Within the first 10 months of releasing the Toolbox, we fielded 800 online inquiries,” says Gershon. “Interestingly, 70 percent of them have been from clinicians looking for quick clinical assessment tools. For example, our 30-minute cognitive battery is equivalent to the traditional three-hour one.”
A tool for the ages
Make it “quick, free, and easy to use” became the informal mantra of the NIH Toolbox team. Striving to enhance neuroscience research by improving data collection, the group of test development experts assembled by Gershon produced a compact yet powerful collection of no-cost assessment tools in English and Spanish.
The Toolbox provides a unique “common currency” across diverse research projects and populations and has been validated across the entire lifespan in subjects from ages 3 to 85. Featuring a comprehensive set of measurements, the NIH Toolbox categorizes some 45 tests into four domains: cognition, sensation, motor, and emotion. Its standardized measures allow for easy comparison from study to study—one of the primary drivers for this project. If all goes according to the NIH’s Blueprint for Neuroscience Research plan, the push to collect “big data” in clinical research will not get only bigger but also better thanks to the Toolbox.
“We need to make the most of our national investments by using the same testing instruments to help extract as much information as possible from a variety of research endeavors,” says Molly V. Wagster, PhD, lead project officer for the NIH Toolbox study and chief of the NIH’s Behavioral and Systems Neuroscience Branch, Division of Neuroscience for the National Institute on Aging. “Going forward, the Toolbox will help the NIH as well as others to do a better job of leveraging large studies.”
The NIH awarded its Toolbox project, in part, to Dr. Gershon for his expertise in computer adaptive testing (CAT). This advanced computer-based approach to test construction speeds up testing by reducing the number of questions while maintaining data collection accuracy. CAT works by constantly adjusting questions to the test taker’s abilities, with the same or better results. Now the complete NIH Toolbox can be administered within a speedy two hours, which is a result of paring down a number of traditional “gold standard” measurements from hours to minutes.
Across the country, the best minds in neuroscience came together via countless weekly conference calls over more than half a decade to create the contents of the Toolbox. Very much a homegrown project, Gershon tapped into the expertise of more than 30 Northwestern scientists and staff. Neuropsychologist Sandra Weintraub, PhD, professor of psychiatry and behavioral sciences at Northwestern, for example, chaired the NIH Toolbox Cognition Battery—to date, the most popular of the measurements. She’s not surprised.
“Assessing brain health is important to health in general,” says Weintraub, renowned for her work in the area of Alzheimer’s disease and dementia. “Often cognitive impairment is a hidden factor that can have a huge impact on clinical outcome variables. Did patients not take their medications because they forgot? Or did they take their meds and not remember they took them?”
So far the NIH Toolbox has piqued the interest of the research community and is being used in prominent studies. These include the National Children’s Study, co-led by Northwestern’s Gershon and Jane Holl, MD, MPH, director of the Center for Healthcare Studies, to examine the health and development of children across the country, to the Human Connectome Project, a multicenter study based at Washington University in St. Louis focused on mapping brain circuitry.
In the case of clinical researcher Dr. Hodges, the NIH Toolbox has worked like a dream. “With something this new, I figured there would be problems,” she says. “But it’s been too good to be true. No problems. Really reliable and the technical support has been outstanding.”