The power of data, often an underappreciated catalyst to fixing the world's pressing problems, was recognized by Dr. Sally Hodder as a critical key in battling COVID-19 before West Virginia even reported its first case. Months later, her vision has taken to the national stage, as Hodder and a team at West Virginia University earned a $1.5 million federal grant to head a multi-state consortium for a centralized, national data resource.
Such a resource could lead researchers into uncovering the best treatment options for COVID-19 patients, said Hodder, an infectious disease expert who directs the West Virginia Clinical and Translational Science Institute headquartered at WVU.
The funding, awarded by the National Institutes of Health, will allow the WVCTSI to work with Delaware, Louisiana, Maine, Mississippi, Nebraska, Oklahoma, Rhode Island and West Virginia in compiling a large, granular dataset that can examine associations of improved outcomes with various treatments. In the clinical and research worlds, patient registry data is utilized by scientists to assess health outcomes for a population.
"The NIH is currently looking at the best treatment regimens to minimize mortality across different patient populations," said Hodder, also a professor at the WVU School of Medicine, who is leading the eight-state consortium. "What's best for a patient in New York City who's 30 might be different from someone in West Virginia who's 70 with heart issues and diabetes. We can ask very fundamental, straightforward questions that, quite frankly, we don't know the answers to with this new virus."
The consortium will feed into the National COVID Cohort Collaborative, the national COVID data source being developed by the NIH.
The project stems from a COVID-19 patient data registry developed by WVCTSI in early spring 2020. Updated daily, the registry includes detailed information from patients including testing method, ICU stays, ventilator use, medications, vital signs, preexisting conditions, labs, procedures and basic demographics such as age, gender and race, to name a few.
"That was the genesis for a suggestion to other centers for translational research," Hodder said. "When the COVID epidemic came up, I suggested we could develop a consortium of research centers located in largely rural states for purposes of developing a patient registry through which investigators could answer important research questions relevant to patients in their geographic area."
What makes this particular initiative important, Hodder said, is that the eight states involved represent diverse and historically underserved and underrepresented populations. West Virginia, for example, ranks third behind Florida and Maine in having the oldest population and has a high prevalence of obesity, hypertension, and diabetes - conditions associated with an increased likelihood of COVID-19 mortality.
Hodder said this funding is a win for West Virginia and other participating states.
"West Virginia should not be anybody's poor brother or sister," she said. "I think federal funding should be applied here to answer the questions about folks in our state. Often, funding goes to urban centers. So this is very important and is closely aligned with the mission of the West Virginia Clinical and Translational Science Institute to develop research infrastructure that improves health outcomes for West Virginians."
In April, the WVCTSI registry contained data on about 8,000 individuals tested through the WVU Medicine system. As of Wednesday (Sept. 23), the number had ballooned to more than 60,000.
Identifiable personal information, such as patient names, is not included, and researchers are provided specific datasets upon approval.
WVCTSI staff Wes Kimble, Matt Armistead and Rick Santee led the charge in building the registry as the Institute partnered with WVU Medicine's Ilo Romero, vice president and assistant chief information officer, and David Rich, chief medical information officer.
And as much as the world wants COVID-19 to go away, Hodder believes that, even after a vaccine, the effects of the virus will be lasting, making the national data resource a long-term valuable tool.
"One of the questions raising its head is 'What are the chronic complications of having been infected with COVID?' There have been reports of individuals who, weeks after their acute symptoms have gone away, experience heart involvement or neurologic symptoms or ongoing fatigue. Establishing this cohort now will provide valuable data for future investigations of the potential long-term effects of COVID-19."
WVCTSI is funded by an IDeA Clinical and Translational grant from the National Institute of General Medical Sciences (U54GM104942) to support the mission of building clinical and translational research infrastructure and capacity to impact health disparities in West Virginia.