iCubed scholar Cecelia Valrie spearheads pediatric sickle cell research project that was awarded a $420K NIH grant
The project aims to predict sickle cell pain episodes so that the 20 million people living with the disease can better manage–or hopefully prevent altogether–their pain episodes.
The National Institutes of Health (NIH) has awarded a $420,000 grant for a research project entitled “Predicting Pediatric Sickle Cell Disease Acute Pain Using Mathematical Models Based on mHealth Data.”
The project is a part of the NIH HEAL (Helping to End Addiction Long-Term) Initiative and was co-funded by the National Institute of Dental and Craniofacial Research and National Institute of Neurological Disorders and Stroke.
Sickle cell disease affects approximately 20 million people worldwide and 100,000 individuals living in the United States. There is currently no reliable way to anticipate sickle cell disease pain episodes. Individuals with the disease are at increased risk of mortality, poor health-related quality of life and high health care use. Pain is the primary factor linked to poor health outcomes and increased medical costs for individuals with the disease.
“I’ve been working with families with sickle cell disease for a little over 20 years,” said Primary Principal Investigator Cecelia Valrie, Ph.D., an associate professor in the VCU Department of Psychology, director of the Pediatric Health and Development Lab and chair of the iCubed Culture, Race and Health Core. “And I think something like this could change the lives of kids living with sickle cell disease and the lives of their families. Pain is the most disruptive complication that these families face.”
The two-year grant project is a transdisciplinary collaboration with VCU faculty from Mathematics (Angela Reynolds, Ph.D., and Rebecca Segal, Ph.D.) and Internal Medicine (Wally Smith, M.D.), and is being co-led by Co-Principal Investigator Reginald McGee, Ph.D., an assistant professor of Mathematics at the College of the Holy Cross.
Sickle cell disease researchers are analyzing data already collected using mobile health (mhealth) technology that measures pain and possible pain-related factors, such as mood, stress level, amount of sleep and quality of sleep. A mathematical model is being developed based on the data that will be used to program devices to help patients and their families predict pain episodes.
“Our descriptors for sickle cell disease pain are inadequate,” said Smith, director of the VCU Adult Sickle Cell Program. Smith is an expert in sickle cell disease research and has served as an investigator on over 50 externally funded grants and contracts. He shared that when sickle cell disease patients experience a heightened period of pain, which Smith refers to as “hurricanes,” three doctors must convene to determine whether or not a spark actually took place. This barrier only causes more undue stress to a demographic that already experiences increased mental health distress.
“Wouldn’t it be nice to not have to have three doctors decide whether you had a hurricane or not? It’s a waste of time,” Smith said. “And math is one way to describe whether or not you’ve had a hurricane.”
“Being able to quantify risk factors and determine when pain will occur or increase so that you can reduce the impact will be powerful,” said McGee. McGee leads the model development, a unique and critical aspect of the project. While other self-management tools for sickle cell disease exist, Smith says the math they rely on has not been strong enough to earn the FDA’s endorsement. This project could provide a mathematical model that would change that.
“We’ve been trying to build good interventions for pediatric patients with sickle cell well before I got into the field,” Valrie said. “So this is really going to help us to be able to work with families in a completely different way.”