One might think that a biomedical researcher, a lawyer and a banker have little in common. Science, after all, is a profession that applies analysis to determine the rules, while the legal field and banking are professions that apply the rules to follow the law.
For Desirae Outcalt, a vice president at Bell Bank, and T.J. Mitchell, an attorney with Jennings Haug Keleher McLeod LLP, a study on aging and age-related diseases forms a unique connection to TGen professor Matthew Huentelman, Ph.D.
Dr. Huentelman’s research requires studying a multitude of populations on a genomic level to fully understand aging and how it effects all walks of life and all aspects of society, from urban to rural and everywhere in between.
But he believes outmoded methods hamper his attempts to recruit study participants.
Traditional recruitment of study volunteers involves asking participants to visit a lab or by collaborating with a clinician who interacts with patients, which means your sample population contains individuals who already have an illness or disease.
For over a decade now, the work Dr. Huentelman’s laboratory at TGen has focused on exploring and demonstrating ways this can change.
In 2013, Dr. Huentelman and colleagues at the University of Arizona launched MindCrowd, one of the first — if not the first — study to not only recruit subjects, but to conduct the study itself, via the Internet. MindCrowd would inform how the healthy brain works and provide a stronger baseline of understanding for when it doesn’t.
To date, more than 300,000 people from all over the world have taken part in the study.
A Deeper Understanding
Today, with promotional help from the TGen Ambassadors — an invitation-only network of working professionals and emerging leaders — including Outcalt and Mitchell, Dr. Huentelman will soon roll out MindCrowd 2.0, an expanded version resulting, in part, from a recent $60 million federal grant.
For Mitchell, the desire to help involves a personal connection.
“Two of my grandparents suffered from severe memory loss before they passed, so this initiative hits close to home for me,” he said. “As a TGen Ambassador, I feel an obligation to reach out to the community to help recruit the diverse population of volunteers TGen will need for this study. Together, our group of Ambassadors are making MindCrowd 2.0 the focus of our efforts for 2022.”
The original MindCrowd.org website included two brain games — one to gauge memory, and another to measure reaction time — which researchers use to analyze brain performance. MindCrowd 2.0 includes 8 additional brain games, with data from these games helping researchers understand how different parts of the brain work. As with the original version, participants will be able to see how they fare on each game and how they compare to others who’ve participated.
“You use different parts of your brain when you play these games and that allows us to capture information about several different regions of the brain,” said Dr. Huentelman. “It’s a data-rich measurement of how human brains work at various ages and under a variety of demographic, health, medical and lifestyle factors.”
The additional games will allow Dr. Huentelman and his colleagues to assemble a more complete picture of each person’s brain, and better understand the process of brain aging.
“Our objective,” he said, “is to have a person’s cognitive healthspan match their physical lifespans.”
Beyond the online games, participants who wish to help further will have opportunities to submit a blood sample for sequencing, take part in a face-to-face assessment, or undergo brain imaging. Current plans include centers for these assessments in Baltimore, Atlanta, Miami and Tucson.
“I joined the Ambassadors program to get a better understanding of TGen and the many fronts on which they’re using precision medicine to patient benefit,” said Outcalt, “and now, by helping promote MindCrowd, I am able to share this extraordinary work with others by encouraging them to come alongside the Ambassadors in support of TGen’s groundbreaking discoveries.”
Eventually, the researchers want to use this information to help individuals prioritize how to cope with stress, sleep better, control blood-sugar, and other strategies to maintain both a healthy body and a healthy mind. They envision new therapeutic approaches that target and enhance different parts of the brain in a fully personalized fashion.
Precision Aging and Improved Outcomes for All
“Cancer researchers already use genomic information to develop specific drug regimens tailored to each individual patient, a process known as Precision Medicine. We are taking a tested formula and directing it toward a new discipline that we call Precision Aging,” said Dr. Huentelman.
If all goes according to plan, MindCrowd 2.0 will create an enormous amount of data. Pulling together and helping make sense of this avalanche of information will be TGen Distinguished Professor and Director of TGen’s Quantitative Medicine & Systems Biology Division, Nicholas Schork, Ph.D.
“MindCrowd 2.0 will result in one of the world’s largest scientific databases devoted to brain health, and will require novel methods to coordinate input, organize the mountains of data, and maintain it over many years in a way that allows for multiple complex queries from researchers,” said Dr. Schork. “It will be a momentous task, but one that should eventually result in breakthroughs that will not only help treat, but also help prevent memory loss.”
For Dr. Huentelman, this next step in the evolution of his research leverages today’s technology to rewrite the playbook on healthy aging and reimagines the scientific landscape to attract people to genomic studies in a whole new way.
He knows, too, there are populations — often the underserved and underrepresented — who don't have the time or ability to visit a research laboratory. And if barriers to participation exist, then it’s nearly impossible to make fully-formed public health recommendations.
“It is important to remember that race and ethnic differences matter for disease risk and disease treatment,” said Huentelman. “Geographical location matters. ZIP codes matter. We have to do a better job of understanding the why and how for the multitude of diseases and disorders that exist, and the associated risk factors.”
Huentelman believes the web-based aspect of MindCrowd provides a great advantage to his study, knowing that so many track their daily workouts and other activities on mobile apps, celebrate their progress and question their declines. MindCrowd taps into that curiosity by harnessing the collective power of these like-minded individuals all asking similar questions.
“Imagine if you had the ability to share this information with a scientist,” said Huentelman.
“Imagine if you felt this sense of community so deep that you were interested in sharing your data to better understand your health, the community's health, what happens when you age, and how things change across time.”
That is MindCrowd 2.0.