In collaboration with the Indiana Clinical and Translational Sciences Institute and researchers at multiple universities, Notre Dame launched the Indiana COVID-19 Registry Sept. 1 to better understand the transmission and the effects of the virus across the state. Lead by Provost Marie Lynn Miranda, the registry has received 100 responses as of Friday.
The Indiana COVID-19 Registry is a research study that aims to gather data related to the coronavirus through a survey open to Indiana residents. Participants can choose to join the registry by taking an initial survey which asks about symptoms, exposures, behaviors and economic and household impacts. After taking the initial survey, registrants will be asked to take follow-up surveys for updates.
Prior to officially beginning her position as provost in July, Miranda began working on the Indiana COVID-19 Registry in June.
The idea of the registry dates back to 2017 when Hurricane Harvey hit Houston, Texas, causing significant environmental, health and economic impacts in the area. As the provost of Rice University at the time, Miranda worked on a team to document the impact of the hurricane on people’s health and housing.
Knowing the health registry established after the World Trade Center attacks had a large impact on the kinds of programs and resources that were made available to those affected, Miranda's team decided to launch a similar registry.
“No one ever really launched a registry associated with the impact of Hurricane Katrina, so we didn’t want to miss that opportunity, so we worked with a coalition of local health departments and community groups to launch the Texas Flood registry,” Miranda said.
The registry initially focused on Hurricane Harvey but later expanded to cover other flooding events in the region. There are currently 20,373 registrants in the Texas Flood Registry.
When the pandemic began, local health departments asked Miranda’s team to construct a COVID-19 registry using the infrastructure of the Texas Flood Registry. After gathering data for a few months, the Rice University COVID-19 Registry could launch a dashboard containing anonymous information from the surveys to provide public data regarding the spread and impact of the coronavirus across the United States.
“One of the things that we clearly discovered was that many more people had symptoms than were getting tested, and we were able to look at which neighborhoods people were having symptoms and who is getting tested and who wasn't getting tested, and that helped the local health departments, figure out how where they might want to put some of their mobile testing sites,” Miranda said.
While the Rice University COVID-19 Registry currently has 8,319 registrants, the Indiana registry will need more people to participate before the data can be analyzed and published. The Center for Research and Computing has also been working to support the registry and created a highly secure data system to protect the confidentiality of the responses, Kallie Lies, software development manager said.
Miranda said the team will need an adequate number of responses per county, around 50 responses, to create a sub-map. In order to encourage people to respond, the team will run a series of Facebook ad campaigns and outreach efforts across the state.
“For these registries to work, you have to successfully reach out to and connect with community groups and neighborhoods, and communities themselves, all over this state,” Miranda said.
Jessica Brookshire, the senior program director of Notre Dame research, has been assisting with communication efforts across the state.
“I think it's a really great opportunity for Notre Dame to be a partner in a bigger state project,” Brookshire said.
Having worked with the Indiana Clinical and Translational Sciences Institute, a partnership between multiple universities and organizations in the state, to launch the registry, Brookshire said she looks forward to seeing the data the surveys produces.
“I think we'll be able to see a lot of similarities throughout the state, but I would imagine, what I started to see was some differences based upon community and county policies and changes, so it'll be interesting to see how we're all the same and also think about ways in which we're different in various communities,” Brookshire said.
Serving as project manager for the Texas Flood Registry, Rice University COVID-19 Registry and the Indiana COVID-19 Registry, one of Rashida Callender’s roles is to look at survey development. When she began working on the Indiana registry specifically, her team considered ways to make the questions more culturally relevant to the state by altering some of the questions.
After participants enroll in the Indiana registry, Callender said her team will continue making adjustments to the survey to improve.
The biggest challenge of a registry or any survey, she said, is attracting enough participants of varying demographics.
“Because it is a web-based survey there is a bias as a sample that we would have to take into consideration when we present the results,” Callender said.
Surveys like the COVID-19 registry tend to attract people who possess a higher level of education, she said. These studies also receive more responses from women and older adults.
Miranda encouraged everyone to take the survey regardless of whether they tested positive for COVID-19 or not because they need people of varying experiences for the registry to gather comprehensive data.
“We’re living through the era of COVID, and it’s challenging us in all kinds of ways,” Miranda said. “And in some ways you feel a little helpless to do anything about the challenges that COVID is posing for our immediate community, for our country and for our world, and participating in the registry is a way to do something very direct to help the medical community, the public health community and to help governing agencies to understand the impact of the virus on all of us and shape programs that will better support all of us coming through the pandemic.”
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