The aging population is crucial for Alzheimer's disease research, yet clinical trials have historically underrepresented older adults and diverse communities who are disproportionately affected by the disease.
As a community research liaison for the Department of Neurology at the Indiana University School of Medicine, Zipporah Melton was determined to break down those multifaceted barriers in her hometown.
“I believe the aging community feels as though, once they reach a certain threshold, they are forgotten,” Melton said. “Research is showing that this community is growing, and Alzheimer’s disease is affecting a large population of these individuals. It deserves attention, and the people that are plagued by this disease deserve that attention as well.”
An Indianapolis native, Melton earned her bachelor’s degree in biology from North Carolina Agricultural and Technical State University and master’s degree in medical science from the IU School of Medicine.
After working as a community research liaison for the Alzheimer’s Disease Neuroimaging Initiative (ADNI) clinical research study site at the Indiana Alzheimer’s Disease Research Center for two years, Melton started medical school this fall. She is currently enrolled in the IU School of Medicine—Northwest-Gary urban medicine program, designed to prepare medical students to address the unique healthcare challenges that urban communities face.
Supported by funding from the National Institute on Aging, part of the National Institutes of Health, ADNI is a longitudinal, multi-center observational study. Researchers at more than 60 sites across the United States collect, validate and utilize data — including MRI and PET images, genetics, cognitive tests, cerebrospinal fluid and blood biomarkers — as predictors of the brain condition.
Since its launch in 2004, the study has made major contributions to Alzheimer’s disease research, enabling the sharing of data among researchers around the world.
To recruit participants, Melton established an active presence at numerous community events, including the Indiana Black Expo and Indy Juneteenth. She also hosted talks at local libraries, including one on healthy brain aging in which she discussed cognitive health and aging and reviewed positive behaviors community members can practice that may reduce Alzheimer’s risk.
“A community research liaison’s role is to bridge the gap between people and clinical research,” Melton said. “For several reasons — including a lack of education and distrust in the healthcare system — community members don’t understand what it means to participate in research.
“My job was to go out and emphasize the importance of clinical trials by explaining what participation entails, the care and support they will receive as participants, and the overall impact their involvement could have in progressing treatments and, one day, finding a cure.”
Jared Brosch, MD, associate professor of clinical neurology and an ADNI principal investigator for the IU School of Medicine clinical research site, said Melton was instrumental in educating and encouraging underrepresented communities in and around Indianapolis to participate in groundbreaking Alzheimer’s research at the IU School of Medicine.
“Community research liaisons are incredibly important,” Brosch said. “Research of complex diseases requires a diverse sampling population to ensure new developments in prevention and treatment are applicable to everyone. Rebuilding community confidence and trust is a long process that requires an individual who is tenacious, trustworthy and ethical. That’s Zipporah. She’s an incredibly thoughtful individual who sets the example for how to connect with the public at large in a meaningful way.”
Scott Herring, research coordinator for the Department Neurology, said Melton was the first person to hold this position and “has set the standard for what we hope to capture in the future.”
“In addition to the community outreach, Zipporah’s second role was to help schedule and attend ADNI participants’ clinic and scan visits,” Herring said. “She excelled in both roles.
“People would get lost on their way to the clinic and, on more than one occasion, she would call them and say, ‘OK, you stay put. I’ll find you and then drive you to your appointment. She went above and beyond for our patients.”
Melton said the most rewarding part of the job was building relationships in her community, whether it was with someone curious to learn more about the difference between dementia and Alzheimer’s disease or a family member committed to caring for their loved one living with a neurodegenerative disease.
“Sometimes we forget — especially in the research setting — that we’re dealing with people, and people come with stories,” Melton said. “I really enjoyed being able to be exposed to that side.”
Melton shared her experiences and ADNI results as a co-author of “Community-Engaged Research Methods and Preliminary Findings: Insights from ADNI4 Engagement Core’s Community Research Liaisons and Navigators,” which the team presented at the Alzheimer’s Association International Conference this past summer in Philadelphia.
“The paper acts as a manuscript that not only emphasizes the importance of community research liaisons, but also creates a standardized approach,” Melton said, “Every community research liaison, regardless of the study they participate in, but specific to ADNI, will be able to understand these are the things that you should do as a baseline approach.”
Brosch said Melton’s interest in sharing information with other institutions to help them engage with their own communities “speaks to her genuine passion for helping people.”
“This program and Zipporah’s elevation of it brings recognition to IU School of Medicine’s drive to interface with our society in innovative ways that we hope will build bridges,” he said.
Melton’s efforts were nationally recognized in May at the ADNI steering committee meeting in San Francisco, when she was awarded the Community Champion Award for outstanding advocacy and support of community engagement for Alzheimer’s disease.
“I was very surprised and honored to be recognized in a room full of other community research liaisons from some of the 65 other ADNI clinical sites across the country,” Melton said. “One of the benefits of working in this role at the IU School of Medicine is that I always felt like my work was seen, but it did feel awesome to hear what ADNI thought too.”
Melton is interested in pursuing a career in neurology, with a focused commitment to conducting clinical research.
“My goal is to step into a role similar to my former principal investigator, Dr. Brosch, where I work with patients in the clinical setting, but also participate in research,” Melton said. “So, if I see patients going down a certain track that aligns with a certain disease or symptom, then I will be able to say, ‘Hey, I am working on this study that I think you would benefit from participating in, and I will be with you alongside your treatment journey.’”
Although she is unsure about a specialty, Melton said Alzheimer's disease and those affected by the disease will “always hold a special place in my heart.”
“I love studying it and seeing how research is really progressing with treatments,” Melton said. “There’s no cure yet, but with the way it’s going, I’m positive they’ll find one.”
