Two University of Florida College of Nursing researchers earned a four-year $3 million grant to support a large national study to test the effect of a web-based educational tool that aims to help young adults understand sickle cell disease — or even prevent it from being inherited.
The award from the National Human Genome Research Institute, a division of the National Institutes of Health, will fund a study comparing a web-based, interactive tool with an e-book to analyze its effect on genetic inheritance knowledge and reproductive behaviors for vulnerable individuals, as well as to determine which method is more effective. The researchers expect participation by more than 500 young adults with sickle cell disease or sickle cell trait from across the United States who plan to have children in the next two years and are at risk of their child inheriting sickle cell disease.
College of Nursing faculty and UF Health Cancer Center members Diana Wilkie, Ph.D., R.N., FAAN, and Yingwei Yao, Ph.D., a research associate professor, join Sriram Kalyanaraman, Ph.D., a professor of journalism at the UF College of Journalism and Communications, as the research study’s principal investigators.
CHOICES is a web-based, personalized and interactive multimedia educational tool for young adults with sickle cell disease or sickle cell trait to learn about genetic inheritance. The team hopes CHOICES can be used to educate parents about genetic inheritance and encourage them to participate in reproductive health behaviors that match their informed plan for becoming a parent.
Behaviors promoted by the tool, such as partners communicating about their sickle cell status, learning about testing for sickle cell trait and making their parenting plan, may help parents prepare for a child with sickle cell disease or prevent it from being passed to children.
“This research is truly the first of its kind,” said Wilkie, the Prairieview Trust – Earl and Margo Powers Endowed Professor at the College of Nursing. “Building on our previous studies, CHOICES breaks new ground by providing, before conception, the necessary genetic and health behavior information to individuals affected by sickle cell disease or carrying the sickle cell trait. We are studying CHOICES to see if it helps individuals make decisions before pregnancy and then implement those decisions to achieve their informed parenting plan.”
The team also hopes to investigate the relationship between demographic factors — such as gender and sickle-cell carrier status — and how well individuals respond to CHOICES. Wilkie and Yao also believe using CHOICES as a reproductive health intervention could transform the genetic counseling field.
Other members of the multidisciplinary research team from the College of Nursing and College of Medicine included Miriam Ezenwa, Ph.D., R.N., FAAN, an associate professor of nursing; Brenda Dyal, Ph.D., D.N.P., a research assistant professor of nursing; Agatha Gallo, Ph.D., R.N., FAAN, an adjunct professor of nursing; Vandy Black, M.D., a former adjunct associate professor of medicine; and Keesha Roach, Ph.D., R.N., a former assistant professor of nursing.
Research reported in this publication was supported by the National Human Genome Research Institute of the National Institutes of Health under Award Number R01HG011927. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.