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KU ADC focuses on protecting research volunteers and clinical trials during the pandemic

KU ADC focuses on safety of research volunteers and protecting the integrity of its research during the pandemic

KU ADC focuses on safety of research volunteers and protecting the integrity of its research during the pandemicAs the world stumbled to a halt during the COVID-19 health crisis, researchers at the University of Kansas Alzheimer's Disease Center sprang into action.

Its ongoing response to the global pandemic has included taking steps to preserve ongoing important clinical study activities, hosting informational meetings to help keep research volunteers up to date and working to ensure the health and safety of multiple vulnerable populations.

Protecting the research and volunteers

In early April, the spread of COVID-19 forced a halt to more than 250,000 clinical research projects nationwide, including more than 25 at the KU ADC. The KU ADC is one of 32 National Institutes on Aging-designated Alzheimer's Disease Centers in the nation. It researches the treatment and cure of dementias, with a focus on how lifestyle factors such as fitness and physical activity influence normal aging and Alzheimer's disease.

Although essential visits related to its drug trials have continued with enhanced safety protocols, all in-person visits related to observational research trials were paused and replaced with telephone and telehealth contacts, when possible. Visits for research participants engaged in diet and exercise trials were put on hold as well, though they were encouraged to continue the intervention at home.

"It was very challenging to shut things down and work to maintain the integrity of the studies so that all our work does not go in vain," said Jeffrey Burns, M.D., co-director of the KU ADC. "Each study was like a puzzle and required a lot of thought as to the effects of stopping, slowing or changing how we deliver some aspect of the study; for example, could we do something by phone versus in person. This took a lot of work from everyone on our team."

Spreading the word

In an effort to continue to engage with current and former research study participants, the KU ADC began hosting external town hall meetings using the video conferencing platform Zoom. The virtual gatherings updated community volunteer participants on the status of the center's research projects and detailed new safety precautions designed to help protect both research volunteers and KU ADC personnel from COVID-19.

Town hall participants also learned about strategies and helpful resources for remaining emotionally healthy during an otherwise socially isolating time, guidance that is especially crucial given that both individuals with dementia and their caregivers are already at higher risk for depression.

"Routine, structure and productive activity are all important weapons in keeping depression at bay," said Michelle Niedens, LSCSW, director of the Cognitive Care Network, a community-based program at the KU ADC focused on early detection, provider partnerships, and education. "Being attuned to the risk of depression and reacting early through establishing a structured routine and reaching out for additional support is key in mitigating some of the potential consequences of this risk. This might mean getting sufficient respite, engaging in those things that bring you pleasure, connecting with others, exercising when possible and getting adequate rest."

The KU ADC currently hosts two virtual support groups for caregivers and families of people with dementia, and the staff anticipates adding three more as demand increases. KU ADC Cognitive Care Network staff also is available to talk through questions and challenges as well as to direct families to resources such respite care agencies.

"COVID-19 has required all of us to be creative in how we socialize, work and find enjoyment. Creativity is a brain exercise," Niedens said. "Many people are also using this time to simplify and organize their homes. This kind of process is a valuable component in supporting the person with dementia in navigating their environment in as independent a way as possible."

Nearly 100 individuals tuned into to view the pilot town halls. After such a favorable response and surveying the interest of its 900 current and past research volunteers, the KU ADC plans to offer more virtual community gatherings. Between now and the end of the year, the center will use the format to tackle a range of topics such as Alzheimer's prevention strategies, brain health and the importance of early diagnosis.

Outreach to special populations

The KU ADC is reaching out to both the African American and Latino communities, which have been hard hit by the virus across the country. Researchers are calling African Americans already participating in its other research programs to do isolation checks, and mailing COVID-19 information to individuals who request it. The center is communicating with its Latino participants in multiple ways, including calling and providing reliable information, whether related to COVID-19 or dementia or sometimes both, in Spanish on its Facebook page, @KUADCespanol.

KU ADC researcher Jaime Perales, Ph.D., MPH, and research assistant Alberto Miale helped translate into Spanish a guide with recommendations for caregivers of people with dementia in times of COVID-19. The guide, initially developed in English by a team from Emory University, is being distributed nationally. Perales also is collaborating with the National ADC Network to translate into Spanish a survey that will be administered nationwide to participants seeking to understand the impact of COVID-19 on their lives.

Coming back online

As the initial wave of the pandemic passes, the KU ADC anticipates relaunching its work soon, perhaps by early June. With all the meticulous planning that went into pausing its research efforts, the center is confident its studies will be completed in a way that maintains their validity and integrity.

When the KU ADC begins to come back online, the slate of newly instituted safety measures will remain in place.

"We are looking forward to starting up and putting a lot of thought into how we might stage things so we can accomplish the most important activity first, with safety of our participants and staff and ensuring study integrity as the top priorities," Burns said.

To learn about virtual support groups, contact Amy Yeager at For more information about research participation opportunities, visit the KU ADC website.

KU School of Medicine

University of Kansas Medical Center
Department of Neurology
Mailstop 2012
3901 Rainbow Blvd.
Kansas City, KS 66160
Phone: 913-588-6970
Fax: 913-588-6965