- More than 20,000 people have enrolled in the UCLA Depression Research Registry, which improves and streamlines longstanding obstacles to recruiting participants for medical research.
- UCLA now aims to expand the registry to enroll participants from throughout Los Angeles.
- The registry helps researchers reach equity, diversity and inclusion goals.
Recruiting participants for health care studies is typically time-consuming and expensive, and the process often yields minimal returns. Researchers have to cast a wide net for people who meet specific criteria but also are representative of the larger population. Then, those who respond might qualify in some criteria but not others. And those who qualify might not always be willing to participate fully in the research.
But a new approach developed by UCLA has already improved recruitment for research studies on depression and mental health. With 20,000 participants and counting, the UCLA Depression Research Registry solves many of the process’ longstanding challenges — obstacles that can slow the momentum of important research projects, just when they are getting underway.
The registry was conceptualized by Dr. Arash Naeim, co-director of the UCLA Clinical Translational Science Institute and UCLA Health’s chief medical officer for clinical research; and its development was catalyzed in 2020 with the launch of a digital mental health study
Most of the people included in the registry thus far are patients from UCLA Health who volunteered to enroll. And based on the program’s success, UCLA is now looking to enroll interested participants from across Los Angeles.
The registry streamlines the recruitment process by creating a pool of willing, eligible research subjects — people who have already declared their interest in clinical research and specific topics in advance — enabling scientists to more readily identify participants for their specific studies.
“I was surprised how quickly researchers and UCLA Health embraced it, and most importantly, how the people in the community took to it,” Naeim said. “That it proved successful without having to do much fine-tuning out of the gate makes me very optimistic that the registry is ready to expand.”
Naeim added that the model could also be applied to gather potential participants for studies on a wide range of other health conditions.
The registry is a collaboration between the UCLA Center for SMART Health, which aims to transform health care through emerging data and technologies, and the UCLA Depression Grand Challenge, a campuswide initiative to help cut the global burden of depression in half by 2050.
“We embrace collaboration and never shy away from trying new tactics, and Arash’s idea for the registry has proven itself to be a major asset to us,” said Dr. Nelson Freimer, the director of the Depression Grand Challenge. “For a condition as complex and far-reaching as depression, large sample sizes are paramount to identify patterns. We also need to represent the full population to be certain that our discoveries apply to everyone.
“The registry makes us more confident than ever in our ability to meet our size and representation recruitment targets and ensure the highest breadth and quality of research possible.”
A straightforward approach
The way it works is surprisingly straightforward: Participants need only submit basic demographic details about themselves and indicate which study topics they’re interested in. Enrollment is open to anyone, and registrants do not need to have a history of specific symptoms or to have been diagnosed with depression or any other condition.
When a UCLA study is about to begin, the researcher can search the registry for people who meet their criteria.
“It’s like matchmaking,” said Antonia Petruse, director of the UCLA SMART Health Embedded Clinical Research and Innovation Center, which administers the registry. “With this tool, we’re able to reach community members and researchers, and more importantly, help them reach one another at a much faster pace.”
The registry will help UCLA researchers toward a key goal for the Depression Grand Challenge: engaging with a diverse representation of communities that have long been underrepresented in clinical research.
“We want to ease the burden of depression and find what works to do so,” Freimer said. “That means nothing if we’re only researching a subset of the millions of people affected by depression.”
Making the effort to invite all populations in research is only one step: Even if researchers attempt to include a diverse range of people, those people might be hesitant to engage. Many from marginalized communities are reticent to participate in medical research, due in part to past mistreatment in research and health care. And, when it comes to research on depression and mental health, social stigmas can be another hurdle.
“The registry doesn’t resolve this all in one fell swoop, yet we are acutely aware of the need for equitable, inclusive and diverse research, and this is a major step forward,” Naeim said.
Because each participant self-reports their demographic data, researchers can identify — more easily and earlier in the process — when their recruitment efforts are lacking subjects from underrepresented populations, and then can adjust accordingly.
The registry aims to add several thousand participants per month, with a goal to reach a total of 25,000 participants by the summer. Researchers are currently screening participants for the grand challenge’s OPTIMA study, which is using Apple Watches and magnetic resonance imaging, or MRI, to research anhedonia, a debilitating type of depression that depletes the ability to feel enjoyment.