The West Virginia Clinical and Translational Science Institute (WVCTSI) at WVU has received $1.5 million from the National Institute of Health to work with eight other states in collecting COVID-19-related data.
Because the SARS-CoV-2 virus is new and its effects on health are unknown, the National COVID Cohort Collaborative (N3C), a program from the NIH, allows hospitals from across the country to contribute COVID-19-related data to a centralized data resource. However, data collection can require a lot of financial resources, which can be difficult for states with less funding.
Dr. Sally Hodder, director of the WVCTSI, and the institute's team have sought to develop an opportunity for areas with underrepresented populations to collect and contribute COVID-19-related data to the N3C.
West Virginia and eight other states that were already part of a special NIH funding program for typically underserved and rural communities called Clinical and Translational Research (CTR) collaborated to write a grant that would award them funding to help specifically with COVID-19 data collection.
“The NIH felt it was important to have a group to really support the successful implementation of N3C among CTR funded states,” Hodder said.
All nine states, including West Virginia, Delaware, Louisiana, Maine, Mississippi, Nebraska, Oklahoma and Rhode Island, were already collecting their own COVID-19-related data. The $1.5 million NIH grant is used to help facilitate the packaging and transfer of the data to N3C.
It is also used to enhance investigator involvement throughout each state. For example, there will be an event to help engage investigators by giving them opportunities to discuss research and to help facilitate quality and productivity of research projects.
“We’re the lead institution. We manage the entire project across these different sites,” said Wesley Kimble, assistant director of clinical research services. “We provide guidance where people need it.”
Kimble said because various hospitals use different electronic medical records, some sites might need to change the way the data are presented. For example, one site might indicate a female patient with the letter “F” and a different site might use the whole word “Female.” The funding helps with the process of harmonizing the data so that all the sites are using the same format. Data will also need to be de-identified to protect the patients.
“Right now, all of the CTRs are at the stage of getting all of the necessary approvals to submit the data that will then need to be harmonized,” Hodder said.
Data from a single patient can be collected on a long-term basis so that the effects of COVID-19 can be tracked across time. Kimble said the amount of data collected from each patient is enormous. The database includes information such as ventilator settings, temperature fluctuations, medicines the patient received and when a patient was discharged.
“We were actually pulling temperature and oxygen saturation every couple of minutes,” Kimble said. “We can get very very granular with clinical data.”
Researchers across the nation will have access to those data to answer research questions and run statistical analyses.
“I think one of the more interesting aspects will be in the future,” Hodder said. “COVID-19 surprised us on a regular basis about the acute manifestations, but now it is becoming clear that there can be chronic manifestations. For example, there can be heart inflammation or neurologic syndromes.”
Data collected from underrepresented populations, like Appalachia, is incredibly important for researchers who want to know how COVID-19 might affect some populations differently than others.
“We always want to look at our population compared to other populations and see if we can determine what it is that makes us more at risk or causes outbreaks that happen here,” Kimble said. “Most of what you see in the literature right now has to do with COVID in urban areas, not rural areas.”
With the amount of data that is being collected, Kimble said it takes a very special team with special skills to get something like this done.
Kimble said that data experts and staff who are part of the WVCTSI team are invaluable in the effort towards a deeper understanding of COVID-19.