This is not another story about COVID. This is a story about how a group of scientists—including a neuroscientist, virologist, and nephrologist—and school leadership rolled up their sleeves, stepped outside of their comfort zones, and formed an unlikely team that relentlessly navigated a pandemic in real-time to keep some of the most vulnerable students to the virus safe, staff healthy, schools open, and how at times, they were able to stop COVID in its tracks.
A national designation
COVID was leading cause of death for people with Intellectual and Developmental Disabilities (IDD) in 2020
According to a study in the journal of Disability and Health, COVID was the number one cause of death in individuals with an IDD in 2020.
According to the NIH, a non-vaccinated person with an IDD is four times more likely to contract COVID-19 and eight times more likely to die from the virus than someone without an IDD.
In April 2020, as COVID wreaked havoc across the globe, the University of Rochester received a new designation from the National Institutes of Health (NIH). It became one of about a dozen Intellectual and Developmental Disabilities Research Centers (IDDRC) in the country.
This designation makes the University one of only eight with the “trifecta” of NIH awards related to intellectual and developmental disabilities (IDD), which includes the established University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD), with its focus on training and service; and Leadership Education in Neurodevelopmental and Disabilities (LEND) program, with a focus on education.
This newly minted designation strengthened the long-standing relationship between the Neuroscience community at the University and the Mary Cariola Center that dates back to Tris Smith, PhD, a pioneer in autism research who helped cultivate that connection and build part of the foundation for the UR-IDDRC before his untimely passing in 2018. So, a year into the pandemic, when the NIH was looking to understand how COVID was spreading in the IDD population, the UR-IDDRC and Mary Cariola took on a $4 million project, funded by the NIH Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) program.
“Very few IDDRCs could have done what we were able to do in this project. This strong relationship [between UR and the Mary Cariola Center] has been built up over years, and is founded on mutual respect and trust. The underlying maxim that John Foxe and others continually reinforce is: “nothing about us, without us”—which defines a best practice when partnering with historically marginalized populations,” said Steve Dewhurst, PhD, vice dean of research at the Medical Center, recently named vice president for research at the University, and co-principal investigator of the RADx-UP study. “That coupled with the size of our academic Medical Center, we are small enough that we know each other but diverse enough that we could create this team that included me, a virologist, the senior associate dean of clinical research [Zand], and the co-director of the IDDRC [Foxe]. Then to have a testing lab already up and running and highly trained staff in the school, we were the right place for this to happen.”
“If there is a group of students that cannot afford to miss being in school, it is this group,” said John Foxe, PhD, director of the Del Monte Institute for Neuroscience, co-director of the UR-IDDRC, and co-principal investigator of the RADx-UP study. “Many children with an IDD have social communication deficits, speech, and complex health or medical issues. These students need intensive sensory interaction, intervention, and as much socialization and social interaction as we can give them. They need to be in school.”
COVID testing was the key
“We could not get testing, and it’s what we needed to keep our schools open,” said Karen Zandi, president, and CEO of the Mary Cariola Center. The Center serves more than 450 students ages 3-21 with severe IDDs and complex medical needs. When Zandi learned this project would bring testing into their schools and take the burden off staff and students, she saw it as a necessary opportunity. “[This partnership] allowed us to offer testing onsite, and, eventually, it provided mobile testing. There was a trust factor for many of our families about where and who was administering the test. Many were grateful we could do it right at school.”
Preventing the spread of an airborne virus can prove difficult in a population of people who do not understand social distancing and, in many cases, cannot wear or tolerate a mask. But like all schools, they adjusted to meet requirements and mandates. They altered classroom environments, added plexiglass shields, and bought more equipment to keep the students from sharing. And when the testing came into the building, so did the real-time benefits. “Almost immediately, we were able to catch positive cases early and identify asymptomatic people as well,” said Zandi.
Achieving herd immunity
Isolating persons with positive tests and knowing antibody levels within the Mary Cariola Center community helped keep the virus at bay. Vaccinations were not given or required in this research project, but antibody levels—from vaccinations and illness—were collected and considered as the school reacted to an ever-changing environment. “We could see how the immunity progressed and changed in both vaccinated and unvaccinated people within the study,” said Martin Zand, MD, PhD, co-director of the Clinical & Translational Science Institute and co-principal investigator of the RADx-UP project, who leads this aspect of the research, including collecting the samples at the school. “Because of this, we know we achieved herd immunity at the school.”
With this data, coupled with COVID tests, and other information specific to the school, Zand and Christopher Seplaki, PhD, associate professor of Public Health Sciences, created hundreds of models(scenarios) to understand how an airborne virus could travel through the buildings, hallways, and classrooms.
“These models informed us how we might help school officials lessen the burden of a respiratory disease that arises in the community,” said Zand. “Keeping these students safe was the highest priority. The staff were curious as to whether the things they were doing were benefiting the people in the school. Everyone on the team was curious. We all taught each other.”
Success means remaining quick and nimble
Every Wednesday morning, nearly a dozen people meet over Zoom. These regular meetings started in 2021 and allowed the team to respond quickly and adjust to the fluidity of studying an evolving virus within a school. The translational nature of this project meant that as testing came in, models considered different scenarios, and in these meetings, both the school officials and the scientists could ask and answer questions in real-time. “It was fascinating how the study evolved,” said Ann Dozier, PhD, chair of Public Health Sciences, co-investigator, and lead of community engagement for the project. “There are very senior people on this project, like John, Steve, and Martin. They were key in helping to navigate it. Discussions and adjustments to new strains and mandates were all part of those weekly meetings.”
“We had a lot less missed [staff and student] time due to illness than we would have had without this study. The availability of testing was vital because everybody was frightened about the virus. The rule was, you do not feel well, stay home,” Zandi said. “But because of RADx-UP, we give tests and get immediate results. We were able to ease some of the burdens for our staff and parents who wondered if they should or could send their child to school. It was a lot of information, constant work, and communication, but it worked well with our nurse who managed this with our medical team and the Medical Center testing team.”
Informing the future: Airborne illnesses in the IDD community
The data collected by this study could change how organizations respond to airborne viruses in settings that support the IDD community in the future. The team has shown that protocols and procedures can mitigate the spread of COVID. “We are working on the datasets and are starting to tee up a series of publications about our observations,” Foxe said. “We wanted to see the whole picture and use dense data over a long period to be able to say something substantive to be used to help keep this vulnerable population safe.”
Keeping the students safe is why both people at URMC and the Mary Cariola Center raised their hands to take on this project. That shared mission is on track to having broad, lifesaving implications. “You’re not getting past the door unless you love the Cariola students first. They are an important part of our community with lots of gifts and ability,” Zandi said. “The people involved in the study demonstrated that their work kept our students and staff safe and will provide fruitful information to others living and working in the IDD community on how they can mitigate the spread of airborne viruses. From my perspective, testing was a very important part.”
Article originally appeared in the NeURoscience Newsletter Volume 18