The Foundation’s Scientific and Clinical Research Grant Program has awarded funds to Dr. Tyler G. James’s research group in the University of Michigan’s (U-M) Department of Family Medicine. This study is focused on understanding how CHARGE syndrome is defined and experienced within the CHARGE community. The U-M research group has identified that understanding how to group individuals with CHARGE syndrome is an important priority for improving clinical research, as there is currently no clear approach for clinical studies. The team will learn from individuals with CHARGE syndrome, parents and caregivers, and healthcare providers about how differences in CHARGE syndrome are described and understood. By bringing together these perspectives, this work will help guide more meaningful and inclusive approaches to CHARGE syndrome research.
As part of this study, adults with CHARGE syndrome and parents or caregivers of children with CHARGE syndrome are invited to participate in a one-on-one virtual interview to better understand the use and impact of terms like “mild,” “severe,” and “atypical” in CHARGE syndrome. The team will also interview healthcare providers to understand how they make decisions about patient needs and how they think about differences between patients. The goal of the interviews is to better understand how labels related to severity are used in practice and what informs clinical decision-making. By participating, your perspective can help improve the inclusion of people with CHARGE syndrome in clinical research.
Individuals with CHARGE syndrome, or parents/caregivers of children with CHARGE syndrome, who are interested in participating in this study are encouraged to complete a research contact form to be contacted about future opportunities. The team expects recruitment to begin in June 2026.
Tyler G. James, PhD, is an Assistant Professor at the University of Michigan, whose work focuses on patient-centered research with people with sensory disabilities. He brings expertise working alongside deaf, hard-of-hearing, and DeafBlind communities, as well as direct experience working in the CHARGE syndrome community as an ASL interpreter, researcher, Foundation volunteer, and a 2023 Davenport Fellow. He is joined by Associate Professor Timothy Guetterman, PhD, an expert in mixed methods and health services research, and Logan Roberts, a Research Area Specialist and 2025 Davenport Fellow. The study team also includes patient partner Symone Griffin, a Licensed Practical Nurse, 2025 Davenport Fellow, and member of the CHARGE community. Together, the team is working to ensure the study reflects a range of perspectives and experiences across the CHARGE community. For more information about Dr. James’s research group, visit www.tylergjames.com
