CLEVELAND — More than 3,000 volunteers from 46 states are participating in what’s being called the largest brain study to date.
According to the Cleveland Clinic, the goal of the landmark study is to better understand why billions of people around the world suffer from brain diseases. They’re looking for people who are neurologically healthy to participate. Researchers are excited about the possibilities.
“Many of us who go to the medical field, one of our dreams is to help people and the most difficult part of being a physician is to make a diagnosis and can do nothing to help with it,” said the Director of the Epilepsy Center and Co-Investigator at Cleveland Clinic Dr. Imad Najm.
“As a neurologist, I would love to make a small impact that will enable future generations of neurologists to make a diagnosis and treat, or even future generations of physicians, to come up with some treatments that will prevent disease from happening from the beginning.”
Members of the research team recruited their first volunteer on January 17, 2022, but now they’ve run into an issue. There’s a need for more diverse participants.
“We realized maybe six to 12 months into the study that we are not getting the same excitement about the study from African Americans and Hispanics as we had for Caucasians,” said Najm. “We started to try to understand why, and we put together a team, maybe over the last 12 months, that’s main function is to pursue these outreach efforts to share with our community.”
Language barriers and historic mistrust of medical professionals within minority communities are often the biggest influences for a lack of participation.
Read more about the Tuskegee Experiment here.
Cleveland Clinic researchers are looking into a variety of brain diseases, but take Alzheimer’s Disease for example; according to the Alzheimer’s Association, “while older Black Americans are twice as likely as older Whites to have Alzheimer's or another dementia, research hasn't yet identified the cause.”
Sherelle Tucker, 53, heard about the study and jumped at the chance to volunteer. Like other participants, she goes through annual assessments to check on her progress.
“I work for the Cleveland Clinic, and I work in Community Health Equity, and we were actually contacted about two years ago to talk about the brain study and learn more about it,” she said.
Tucker has had family members and friends dealing with neurological changes.
“I hope that maybe my children's children will be the beneficiaries of whatever outcomes are discovered through this study,” she said.
She does her best to talk with others within the Black community about the study.
“There are all kinds of safeguards to prevent, you know, those who might be interested in participating from going through some unnecessary and harmful outcomes,” said Tucker. “I had no reservations or hesitation, I just felt that it was a good thing that I could do for myself and for members of my community, those who look like me.”
Researchers are also close to completing the Spanish translation for all tests. They're also looking for more men to sign up.
For more information on requirements, click here.
