What's being done to save Black babies in Cuyahoga County

There’s an effort to increase diversity in clinical trials in northeast Ohio.

The Clinical and Translational Science Collaborative of Northern Ohio (CTSC) at Case Western Reserve University has awarded 10 projects to academic and community teams, up to $20,000 a piece, to support work in this effort.

The goal is to eliminate participation barriers, such as lack of transportation, literacy and more, through community engagement.

CTSC is a collaboration between Case Western, Cleveland Clinic, MetroHealth, University Hospitals, Northeast Ohio Medical University, the University of Toledo and VA Northeast Ohio Healthcare System.

“The next time you go to the doctor, you don’t have to wonder as a Black woman, is this medication or intervention going to work on me because people like me were included in the clinical trial,” said CTSC Director of Research Health Equity, Gelise Thomas. “There’s always a great time to build trust and that time is now, it’s always been now.”

One of the projects awarded tackles newborn screenings and rare disease clinical trials.

“Black women in Cuyahoga County are almost four times as likely to lose their baby than white women,” said First Year Cleveland Executive Director Angela Newman-White. “We’ve seen some improvements over the past ten years; however, the disparity just seems to not be closing.”

First Year Cleveland is a nonprofit organization with a mission to ensure that “every baby born in Greater Cleveland will celebrate a first birthday.”

It’s the perfect partner for a study that aims to close the gap in newborn screenings, follow-up and subsequent care. The study starts by outreach to home-based professionals, like nurses and midwives, who directly deal with prenatal and newborn patients.

“In some of these vulnerable communities, these home-based workers are actually helping track down hard to reach people, maybe their telephone numbers have changed, they don’t have internet access as stable as others, maybe you know they’ve changed providers,” Assistant Professor of Bioethics at Case Western Reserve University School of Medicine Dr. Lynette Hammond Gerido said.

While engaging with these home-based professionals, they hope to identify the disconnect and implement a process that will reach women and their babies when they need it most.

“It’s important for us to better understand who’s dropping the ball with making sure that families are getting connected,” said Newman-White. “What we’re trying to do is get a better understanding of how the healthcare systems are actually implementing their process as it relates to identifying and connecting families that have a newborn that has screened at-risk and need some follow-up appointments.”

Researchers also want to raise awareness among these families about related rare disease clinical trials.

“A lot of times when we ask people have you ever been asked to be a part of a clinical trial, they’ll say no; we have a lot of work to do on the professional medical side of things too and not making assumptions that certain communities will not participate,” Thomas said.

In the spring of 2025, researchers hope to have a research plan of action.

“We know that when the community is not involved at the outset and not able to lead that there are great deficits,” Gerido said.

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