Over the past 10 years, a CMU faculty member and his students have helped the world better understand a relatively rare disorder through research and hands-on interaction.
Central Michigan University houses the only CHARGE syndrome research lab in the nation that focuses solely on the complex genetic disorder and its behavioral implications.
“CHARGE syndrome is an extremely complicated condition, and parents are faced with so many surgeries, hospitalizations and doctor visits that it is easy to forget the individual and get caught up in all the ‘medical stuff,’” said David Wolfe, president of the CHARGE Syndrome Foundation. “In the process, the behavioral and psychological components, which in many ways are the most complex portion of the syndrome, are put on the back burner. It is in this critical area that CMU has excelled.”
Psychology professor Tim Hartshorne began researching behavioral issues in those with the syndrome in 1999 and established the CMU CHARGE lab in 2004. In the past 10 years, 22 students have conducted research projects in the lab and interacted with children and families impacted by the syndrome.
“CMU is a leader in trying to develop a better understanding of some of the behaviors that are often associated with CHARGE syndrome,” Wolfe said. “A better understanding always leads to better treatment and strategies.”
CHARGE syndrome occurs in about one in every 10,000 births worldwide and can cause deafness, blindness, heart defects, growth and development issues, and physical anomalies, according to the CHARGE Syndrome Foundation.
Hartshorne said he is impressed with his students’ enthusiasm for the research and opportunities to work with the children and families.
“The students who work or have worked in CMU’s CHARGE lab have learned a tremendous amount about this relatively rare genetic disorder so that they are actually experts,” Hartshorne said.
Hartshorne and his students have published 30 studies from their research on CHARGE. These studies have explored autistic-like and challenging behavior in CHARGE syndrome, executive function and much more. Families of those affected by CHARGE also benefit directly from these studies as Hartshorne and his students travel to present their research at conferences through the U.S. and around the world.
Current research taking place in the CHARGE Lab includes the development of play in children with CHARGE syndrome, Tai Chi as an intervention for issues, headaches in children with the syndrome and communication systems in CHARGE.