Our research focuses on behavior in CHARGE syndrome. Children with CHARGE often display behaviors which are very difficult to manage, and may be described as autistic-like, obsessive-compulsive, hyperactive, self-stimulatory, repetitive, and self-injurious. The aim of our research is to understand the sources of this behavior and how to intervene with and even prevent it. We hope to identify a "behavioral phenotype" for CHARGE. James Harris from Johns Hopkins defines a behavioral phenotype as "A pattern of behavior that is reliably identified in groups of children with known genetic disorders and is not learned" (Harris, 1995). In other words, if you behave this way, you most likely have CHARGE. Our preliminary behavioral phenotype can be found here.
Because there are no concentrations of individuals with CHARGE, we by and large have to rely on surveys and instruments that parents can complete. Most of the participants in our research are parent members of the CHARGE Syndrome Foundation or are identified through the CHARGE facebook pages or by professionals. We tend to have a very high rate of return in this research, generally at least 80%.
Current Research Projects
Projects currently under various stages of development include the following: the experience of fathers, decision making around the removal of gastrostomy feeding tubes, the prevalence of headaches, the development of social play, the use of an adapted version of Tai Chi as an intervention for children with CHARGE, sleep interventions in children with CHARGE, the use of adaptive and recreational equipment with children with CHARGE, anxiety and the use of calendar systems, the use of medication in children with CHARGE, and unique behaviors in children with CHARGE. An overarching focus of investigation is problems with self-regulation leading to behavioral challenges.
- Fun chi- Maria
- Sleep and CHARGE- Ben
- Play and CHARGE- Megan
- Anxiety- Shanti
- Headaches- Tate
- Fathers- Shantell
- Medication- Blair and Rachel
- Recreational therapy- Gretchen
- Pain in CHARGE- Kasee
- Self-regulation?- Ben and Maria
We welcome undergraduate and (potential) graduate students with an interest in our work to apply to assist in the lab. Click here to learn more.